Kirsty’s Story

Some of the fun things that have happened to me.

Plus my fund raising events.

No one can tell you what will happen next in your life when you have NF, you are kind of in the
dark on how it will affect you, so I have made a Bucket list of things I want to do.
My Bucket List:
  • To go touring to my favourite places around the world that I have not yet visited (Canada, San Diego more of Florida).

  • Ride in a Helicopter.

  • Visit the Northern Lights.

  • Spend a day with Peter Andre at the worlds biggest theme park, maybe ride the biggest roller-coaster/fastest (help him with his nerves).

  • Have a star studied charity Ball. 

  • Get married at the Pavilion in Florida (need a boyfriend first).

  • Do some radio presenting/TV presenting- NYC or at a top UK company.

  • Go snorkelling with Peter Andre.

  • Backward abseil with Peter Andre.

  • Have a second book published.

  • Jump from space.

  • Jump out of a plane.

  • Work with children on children's TV.

  • Meet some NF families from around the Globe.

I started writing what life is like with Neurofibromatosis when I was 9 years old (1999).
I live at home with my mum  (Julie), dad (John) and brother Chris.
My Hobbies are:- Drama, Doing TV work (I love acting), Football, Computers, Play-station 2,  Raising Money for charity and Going to the Cinema.

I suffer from the following conditions, Neurofibromatosis (N.F), scoliosis, Gastroparisis and foot drop. I wear a Boston Brace to help support my spine and a brace on my foot/leg, which is to help with my walking and knee braces on both my knees.

I hope by writing this web site it helps many other adults and children who suffer from Nf and Scoliosis with any problems they may have.

February 2015:
I went away to Cumbria for the weekend while I was there I visited Kendal Castle and went for a nice walk. My legs were hurting, but hopefully the walk helped to make them stronger. It was a lovely weekend and the sun was shining. I have booked to go to Florida for my Birthday, which I am so excited about and I have a good friend coming with me. I am so excited. For the past few weeks I have been talking about my life and what I have got up too  during the week on radio Manchester every Tuesday. I have had a few good weeks.

19th September 2003:
Today was one of the best days in my life. Why?. Well, I thought I was going on one of my many trips to the hospital this morning and that mum wanted to pop a competition entry off at Granada Studios on the way. Mum sneakily asked me if I wanted to go in with her to bring her luck with the competition(mum knew I would say "Yes").
The day begun when we got out of the car and dad said he was just going to park up while he waited for us. When we walked into the building this lady walked up to mum and shook hands and then turned to me and said, “you must be Kirsty, I am Sian Lewis from the Women’s Own Magazine, pleased to meet you”. I still did not know what was going on, I kept asking mum what was going on but she would not tell me, then, in walked a camera crew who introduced them selves. I am Caroline Doherty and we are from GMTV, I was told that I was going to spend the day on the Coronation St’ set with Julie Hesmondhalgh (Haley) and that my brother Chris had wrote this lovely letter to the Women’s Own Magazine to nominate me for the Child of Courage award (I have told you before, he is a fantastic brother). I had a fantastic day with Julie Hesmondhalgh, Sian Lewis (from Woman’s Owen) and the rest of the crew. It was raining but that did not spoil my day. I pulled a pint in the Rovers Return, great fun, walked down the street, met some of the cast members, saw Roy’s café, Haley’s and Roy’s house, the corner shop and lots more. It was truly a fantastic day.
My story has just appeared in the Women’s Own Magazine (3rd November 2003) covering my day on Coronation St’.
A very big thank you goes to Sian Lewis, Julie Hesmondhalgh, Caroline Doherty, my brother and everyone at the Women’s Owen for making my dream come true “Thank You” for such a wonderful day.

News from the Child of Courage Awards:
I did not win the child of courage award but I got down to the finale 20, which was very good. I am still going to London on the 7th December 2003 and going on GMTV with Lorraine Kelly to talk about my condition and the charity that I raise money for (wish upon a star). This is a fantastic charity, they grant wishes for very poorly children. I am trying to raise £1000,00 before Christmas and I am almost at my target (will let you know if I make my target).

GMP Young Citizen of the Year Award:

I have just won the title of Young Citizen of the Year for Trafford run by the Greater Manchester Police. I was nominated by my head teacher Miss Lloyd for how well I cope with my illness and for the charity work I do. I will now represent Trafford for the next twelve months and for my first job I am going to the Trafford Family Police carol service where I have been asked to say a few words about the charity Wish Upon A Star.
1st December 2003:
My first roll as the young citizen for Trafford was to attend the police Carole service and say a few words about why Wish Upon A Star is so dear to me and what I have done to raise money for this charity. At the end of my speech there was a collection for my chosen charity and I am really pleased to say the collection raised over £236,00. I really enjoyed myself at the Carole service.

£1000.00 Target Reached:
“Yes”, I am pleased to say I have reached my £1000,00 target for Wish Upon A Star; I have managed to raise £1225,39p, which will go towards taking a group of 100 poorly children to Lapland to see the real farther Christmas.

I would like to say a big Thank You to everyone who contacted me after reading my story on the web. I am glad I can be of help to you, but you are all helping me too and it's lovely to hear from you.
16th October 2004:
What a brilliant night, I had the shock of my life, my mum told me she was getting a taxi to the Ball and when 7pm came and my brother shouted to me that the taxi had arrived, well, this was some big taxi for outside my gate was a Limousine, it was fantastic. Katie who kindly donated a limo’ ride as one of my prizes also gave me a surprise ride in her limo’ too, Katie was just wonderful and it really made my night. The items I managed to get to auction for the evening managed to raise over £10,000 which was really good and which means I have managed to raise over £4,000 for this wonderful charity in just over a year. I am really pleased about that. Click here to see how the fund raising is going.
10th June 2005:
To day I am off to the Gentlemen’s Night Out Charity Committee Annual Presentation, which is being held at the Hilton Metropole Hotel Birmingham. My self and some other children have been asked to go a long with the Wish Team to pick up a cheque, which the committee have kindly donated to When You Wish Upon A Star. We all had a brill day with lots of surprises, which I will tell you more about later. It was a long day and I was very tired with only getting out of hospital yesterday after three long months but I would not of missed it for the world.

17th June 2005:
To day I am off to Blackpool. The Wish team have asked me if I will take part in a promotional video for them, which is being filmed in Blackpool, we went to the Sea World, Blackpool Zoo, for a meal, and played on the beach. My friend Beth was there too (Beth is on my pic’ page). We all had a brill time and the girls from the Wish team could not do enough for us they really are a great bunch of people and you never know when you are flying away on your holidays or at a function you may just see the video we made.

30th September 2005:
I was in the Manchester Evening News today, my brother Christopher put me forward for the Pride of Manchester Award. I think I find out in December how well I did.

The Manchester Evening News:
The Manchester Evening News have been fantastic in helping me with my fund raising for When You Wish Upon A Star, I asked if they would kindly put letter on there letter page for me so that I could sell pin badges for wish, which they did gladly and I had a fantastic response from Evening News readers, I had lots and lots of letter and donations and sold about 350 pin badges. A big thank you goes to the Editor Paul Horrocks at the MEN for allowing my letter to be printed.

Matthew Brown's Ball, 22nd October 2005:
My friend Matthew has won a scholarship to the prestigious Guilford Drama Academy. He had to go through gruelling auditions to gain this all important place, which is a three year course. This is a dream come true for Matthew. Matthew suffers from CF (cystic fibrosis) and as worked really hard to gain his place. Friends and family held a dinner dance at the SAS Hotel Manchester Airport to help raise money for Matthew's fees, we all had a brilliant time. Cast from Coronation Street also came along. My mum won a TV DVD Combie in the raffle, which I thought was cool as mum gave it me for my bedroom.

11th November 2005:
Today I had the second part of my Math's GCSE paper, no more exams until the 24th November 2005 when I will take my Science papers.

3rd December 2005:
Some friends of mine put together a 1940's event to help raise money for "When you wish upon a star", we all had a great night and managed to raise £1,168.00. Everyone came dressed in 1940's dress and uniform. I would like to say a big thank you to Alan, Lesley, Stacey, Chris, Lee, Nicky, The Royal Mail and all the companies that got involved with the event, you are all stars.

5th December 2005:
Today I found out that I was in the final eight to be named the "Pride of Manchester". The winner will receive £3000.00 for charity, which is fantastic.

12th December 2005:
I went to Lapland with my brother to see the real Santa in Rovanie, Finland. We had to be at the airport for 5am. The flight was nearly three hours long but the time passed very quickly as we had breakfast on the plane and lots of fun with the celebrities who joined us on the day. When we arrived we were transferred to the Enchanted Forest where giant bonfires burnt, we rode on skidoos, snowmobiles and had a Husky ride and met Rudolph. The Finnish people were lovely and very friendly. Later we all sat in a circle in the forest and submit to an Arctic Circle initiation ceremony. This means being flicked round the face with the tail of a reindeer and drinking hot chocolate, all great fun. Finland only has a couple of hours day light at this time of year and it was already going dusk when we landed. After lunch each child met Santa, this was really emotional as you watched each child  going to receive a gift from Santa, we later visited Santa's Village and Santa's Post Office, where his small helpers stamp all the children's letters from all the world and despite not being very well and having to see the doctor we had a great time. The trip was organised by the when you wish upon a star team and over 90 children and a parent were invited, many television stars came along on the trip too. When I got home my legs were really swollen, my mum elevated them up to try and reduce the swelling.

25th December 2005:
What a fab' time I have had, I received lots of lovely gifts from my family and friends.

I also had a lovely surprise gift later in the day when mum asked me to open this large box for her…. What a surprise when I saw this electric Bass Guitar with everything to go with it, I really could not believe my eye’s, mum and dad told me that this was a gift from a wonderful lady in the States by the name of Kristen Parker who wanted to buy me something that I had always wanted, well, she certainly did that. Kristen set up website in memory of her beautiful daughter, Ashley, please read about this remarkable young lady by visiting my fav’ web sites link.

12th January 2006:
Today is the results of who will be named the 2Pride of Manchester" after the public voted for who the winner would be.

The afternoon started by everyone meeting at the M.E.N where we all got to know one another a little better, drinks and food were laid on for everyone to enjoy and help them self’s too. After dinner we all went into the M.E.N boardroom where Neville Richardson of the Britannnia Building Society gave a sort speech about there involvement with the Pride of Manchester after, which Maria McGeoghan, deputy editor of the M.E.N gave a sort speech about each contestant before announcing the three winners in reveres order.

I could not believe it when my name was called as the winner, I was shaking and very much in shock everyone in that room were winners and they had all done something remarkable, it was great having the opportunity to meet so many lovely people. I was really pleased to have won so that I could give the £3000,00 prize over to the When You Wish Upon A Star team, who do a remarkable job at putting a smile back on a sick child’s face. I would like to thank to everyone who voted for me both by post and by e-mail and a very BIG thank you goes to Paul Horrocks editor of the M.E.N, Maria McGeoghan, deputy editor of the M.E.N, everyone who was involved at the M.E.N and Neville Richardson of the Britannnia Building Society. Thank you for giving me a day to remember.

14th January 2006:
I had a surprise visit from my good friends Julie and Martha today, it was great seeing them both and Martha was just so much fun.

8th February 2006:
I called in to see the Wish Team so that I could present them with the £3000.00 cheque I won when I was voted Pride of Manchester, plus I had other cheques for them from the 1940's event, The Royal Mail and donation that I had received.

Sam, Me and Ruth

Me and Ruth

Ruth, Sue and Sam presented me with a big bunch of flowers and tickets to watch Holiday on Ice, this was such a lovely surprise.

11th March 2006:
My 1940's event at the King George, Altrincham raised £793.30p, a big thank you to everyone who contributed and gave donations to the event.

16th June 2006:
Today was my school Prom and I had a brilliant time. The afternoon started by me having my hair and makeup done by Gillian (Gillian does the makeup for the Corrie' stars)who is my new friend, Gillian is really cool and we had a great afternoon together. I decided I wanted to be different from the norm' and go to my Prom in a open army jeep so our friend Lee took me in his jeep, which is from the 1940's, everyone was waving as we went by.

18th July 2006: Back Home:
Our trip to Florida started by a very pleasant flight our pilot was Mark Guest who I got to meet when we arrived at Orlando Airport.

Swimming with the Dolphins in Florida was an ultimate dream of mine and it came true after the when you wish upon a star team granted my wish. The experience was amazing and the rest of my family enjoyed it too! This was a life changing experience that my family and I will never forget. To swim alongside these magical creatures and to receive a kiss from Roxy (our Dolphin) was better than all the medicine.

We were told that the dolphins were free to swim away from us anytime they wanted to and weren't forced to do anything they didn't want to do. Each of us got to kiss Roxy and our photo's were taken doing so. We also got to rub the dolphin down, we were asked to hold our hands out with palm up and the dolphin swam right up to us, I sent the dolphin out to the middle of the water, and also got splashed by the dolphin as she swam past waving her fin! We then swam out to the middle of the lagoon, I went with my brother and mum and dad went next. Then each of us in turn held onto the dolphin while she swam back to the shore, which was a great experience. After our 30 minutes swim with the dolphins.
We all got a hug of Roxy, feed her fish and tickled her belly while she lade on her back. Sadly our 30 minutes in the water were soon up and we all waved goodbye to Roxy, who then lade on her back and waved back, splashing us all one last time.

Me kissing Roxy

Me swimming with Roxy

Chris kissing Roxy

G.C.S.E Results:
I received my results this week, my family say I did really well and are really proud of me. You can see my marks if you go on my press cutting link. I took 15 and managed to gain 9 at A-C grade and my other 6 were still a pass but below a C. I am enrolling on a Performing Arts course at college, which will take me three years to complete. So you never know I may make my dream and become an actor on Corrie' one day.

1st September 2006:
I am busy trying to get raffle and auction items for my next big fund raising event in November. Keith and Pat who own the CopyShop in Cheadle have organised a charity Ball for me with all the money raised on the evening going to my £65,000 target to send 100 sick and terminally ill children to Lapland.

My VIP Trip to Asda with Coleen Mcloughin:
I was nominated to open the Asda Store in Altrincham by a very nice gentleman called Derek Hollows, I did not know anything about this until I received a call telling me that I had been chosen. I was told I would be treated like V.I.P and picked up in a Limo' and that Coleen and I would open the Asda store, well, when I arrived at the Asda store there were so many people outside and TV cameras that I really did feel like a V.I.P. Everyone was so nice after opening the Asda Store with Coleen we both went shopping in the store and Coleen gave me lots of shopping tips, she was really cool and very friendly. I was interviewed for the TV News and later we went for a hot drink where Coleen and I chatted about my fund raising. My interview was on the 6pm TV News. I came away with lots of lovely clothes and items for my bedroom, over £250.00's worth of stuff.
A big Thank You to Coleen, Management and Staff of Asda Altrincham, I had a brilliant day "Thank You".

24th October 2006:
I am off to London for a few days, which I will tell you all about when I get home. But I am in hospital all day Friday having a bone scan, back brace and foot brace made.

I really hope I bump into Ben Shepard while I am in London, he is the most nicest, sweetest guy on television, and I even have pictures of him on my bedroom wall. Anyway I’ll let you know if I do. I love him loads, well who wouldn't with a smile like his.

I never met Ben . But I still had a nice time in London. I went to London as I had won the Well Child award for best brave child age 16 years and over and I will be in the Best magazine the week beginning 28th November '06. I was presented with my award by Peter Schmeichel the greatest Goalkeeper in the history of Manchester United. I also met Dick and Dom you can see the picture on my picture link.

I am busy getting ready for my Charity Ball on the 18th November '06, it's been really hard work and I could not of made this event possible without the help of my friends Keith and Pat from the Copy Shop they have been brill' and very supportive after they read my story in the Manchester Evening News. I hope to raise £10,000,00 on night. Julie Hesmondhalgh (Haley from Corrie'), Ian Kershaw actor/writer, Colin Bell (Manchester City Legend), Tony Martin (The Crooner) and Mr Bernard Manning will all be at my event on the night.

22nd November 2006:
I would like to say a big thank you to everyone for their participation in last Saturday's fantastic event and everyone's amazing generosity, we managed to raise a staggering £24,801.63p and although I was extremely tired for a few day's after. I am really pleased with the amount we managed to raise.

Julie and Me

Julie and Kersh worked really hard on the auction, Keith, Pat, Alex and the team from the Copy shop worked really hard. I could never of done this without there help. My picture went at auction for £2.100.00 and I was asked to do a second one, which went for £2000. bringing in £4.100.00 towards my target.

8th December 2006:
I  have been invited to London to meet Ben Shepard by Chloe and spend the morning watch him present GMTV and Entertainment Today. Mum and me had a brill time and Ben was just as nice as I expected him to be. I even got an hug and kiss. I also met some other celebrities, Jason Donavan, Andy Abraham, Michael Underwood and lots of other GMTV presenters. (see my picture link for photo's).

14th December 2006:
Today I handed over a cheque for £24,801,63p to Ruth from When You Wish Upon A Star with the help of Keith and Pat from the Copy Shop. Stuart Hall presented me with the Hall's Hero Award, which was a big surprise. This will be on Channel M on Monday 18th December 06. More picture on my picture link.

Stuart Hall surprised me
and made me one of his Hero's

Pat, Keith and Me
hand over a cheque to Ruth
for £24,800.00
21st January 2007:
I received a letter over the weekend, which said I had been nominated for the Cheshire Woman of The Year Award 2007. I have been invited to lunch on the 21st March at 12.00 noon. The winner will be presented with a trophy and a cheque for £1000.00 to be donated to the charity of her choice. I don't know who nominated me and they said they cannot tell me, so this came as a big surprise.

All I'm told  is that women from all walks of life are nominated for personal courage, service to their community or outstanding professional achievement. So I will let you know how it all goes.

I am having a 40's event again in April, which I am busy getting items for at the moment, please see my events link for more information.

2nd March 2007:
I am going to have a documentary made about me, which will be called The Day in The Life of Kirsty, filming starts next week and will be done over two days.

I am really looking forward to doing it, they are going to film me at college, hospital, at home and with my mates. Not sure when it will be on TV yet but I will let you Know.

Filming Finished:
After the crew had gone home on the Wednesday we were all really tired, I was going to go to bed but as I was not feeling so well mum asked me to stay down so that she could keep an eye on me. I am so glad I did because about an hour later we heard this funny sound coming from upstairs what sounded like air in the pipes, Waaaaaaaaaaaaa,

When dad went up the boiler in my room had burst letting out boiling hot water all over my bed down the wall on to the carpet. Chris (my brother) managed to get the water shut off and got this guy who he knows to come out and have a look at it. He said that I was not only lucky that I was not in the room at the time but the boiler had been giving out toxic fumes, which could have killed me in my sleep.

My bedroom is gutted, we had to get a new boiler, we are had the boiler moved into the loft for safety reasons. I was so upset as my teddies got it too and are now ruined. The story of my boiler made the Sunday paper, see link.

26th March 2007:
After the hospital on Friday I went to see the filming of Britain’s Got Talent  it was really good, I got to see Ant and Dec, Simon Cowell, Piers Morgan and Amanda Holden. The new concept for this show, required each of the three judges to light an X' if they wanted the act to get off stage. If the act managed to stay and do all there act they got to go to the next stage. it was great fun to watch.

The documentary I took part in is on sky, the community channel on the 21st May'07 but I don’t have a time slot yet. It is only going to be on TV for about 5 min's but longer on the internet. I will let you know when I have more news.

10th April 2007:
Where do I begin to tell you what a brill' Birthday I had? My morning started with me waking up at my grans (my mum's mum) due to the accident at home I still cannot sleep at home. When I got home and after opening all my lovely gifts from family and friends, my friends at the hospital and Post Pal and blowing my candles out, which took some doing lol.. Mum mentioned that we were going out and that I needed to be ready for 5.30pm as we were going for a meal before going to watch a show at the Lowry called ECLIPS, a circus musical, which Julie, Kersh and Martha had treated mum and me to for my Birthday. When 5.30pm came dad asked me to get in the car so that we could get going and as we went round the corner on our estate dad stopped the car and asked me to get out, I could not believe my eyes when I saw Paddy, as a Birthday treat Paddy and Paul had arranged to pick me up in there Limo' Chrysler 300 C (Hemi/ Bentley) limousine... What a car...What a drive... it was fantastic.

Mum and I arrived at The Deansgate (where we were having our meal) and we were met outside by Colin (Paul’s brother) who escorted us to our seats. It was all really yummy and we were both bursting after. Colin is a brilliant cook.

Paddy then took us on to the Lowry to watch Eclipse; we had the best seats in the house and the show was amazing. Eclipse is a journey of the seasons through the elements of earth, wind, fire and water. It had international cast of talented artistes, telling a dramatic fantasy tale ballet, mime, song, dance, aerialists, juggling, rhythmic gymnasts, acrobats. I loved the playful jugglers. You've seen nothing until you've seen Eclipse! The UK's first and only circus musical. Thank you, Julie, kersh and Martha for a brill’ prezzi’. After the show the Paddy brought us back home in the limo'. The next day Paddy and Paul called round with a big bunch of flowers and a box of chocolates. Thank you guys you really made my Birthday special.

11th April 2007:
I had a lovely surprise this morning when I got up, the postman had brought me  a package from Mr and Mrs Ball who had kindly sent me a Birthday gift when I opened it I started to cry, I could not believe what I was seeing. Enclosed was a teddy that was the same as my brothers, he has had his teddy for 20 years. I have always loved his teddy too; mum had tried to get me one many times but was not able to find one.

The 1940's charity night raised over £1,400., which I was really pleased with.

15th June 2007:
I have been invited to have lunch with Prince Harry and Prince William on the 30th June '07 at Wembly, I can't wait, you can read more about it by going to my press cutting link. I have been invited as part of the WellChild award that I won last year.
I went to a party at Julie's last weekend and while I was there I met Rob (Liam out of Corrie') and Rupert (Jamie out of Corrie'), take a look at my picture link at the pictures. I had a great time and did not get home till after 2am.

It's my gran's 80th Birthday tomorrow (16th June) and I have got lot's of surprises for her lined up, my gran is the best and she's been very poorly with lung cancer, I love my gran to bits.

Prince William mum and me

30th June 2007

1st July 2007:
Well, back from London, mum and I had great time meeting Prince William and Prince Harry. I spoke with Prince William, he asked me what I thought about the Spice Girls getting back together and what were the bands that I liked best, he then spoke about WellChild and wanted to know how I became involved with them, Prince William was taken back when I told him how much money I had raised and wanted to know what I done to raise so money. After chatting with Prince William we went for a meal, after the meal we had a photo call with Prince William and Prince Harry, I sat next to Prince William, then we went into the Royal Box at Wembly to watch some of the concert that was being put on in memory of Diana. I was asked to do an interview for the BBC News, Sky TV and Radio. The day was brilliant and everyone was so kind. Thank you to WellChild for making this day possible.

Today was my mum's Birthday so we had a great day celebrating mum's birthday. I also had a great holiday with lots of sun, did not like coming back to the rain thou.

24th July 2007:
I went for my theory driving test today and I am pleased to say I passed getting only one question wrong I am now going to start my driving lessons so be WARNED
I will be on the road lol…….

29th July 2007:
For part of my mums Birthday prezzi' I took my mum to have some pictures done with me, what do you think?

Mum and Me

Mum and Me

14th August 2007:
Both mum and me went to watch the The Antony Cotton show being filmed last Friday, it was really enjoyable, the show went out on TV last night and both mum and me were featured on it in the audience, mum got stopped going to the shops today to ask if it was her in the audience last night lol..

8th October 2007: 10th Anniversary Black & White wish Ball:
Mum, Dad and I went to the When You Wish upon a Star Black and White Ball on Saturday night and we all had a really nice night.

It was held at the Palace Hotel in Manchester. We were entertained by Eaton Road (what great guys), the cast from Corrie' who were brilliant, Kym Ryder (Michelle) sang a few numbers, Michael Starke (Jerry) most famous for his role as Brookside's "Sinbad". could he sing? We were blown over by his singing voice, Katherine Kelly (Becky) sang a few numbers, so many more of the Corrie' cast sang too and were all really good.

My good friend Paul Crone was there too and I had a go at him for not having the guts to ride on the Big one at Blackpool while eating and drinking with me. My very good friend Julie (Haley) and Kersh (Ian) were there too. The night was just fantastic and lots of money was raised so the poorly children on the wish upon a stars book can continue to have there wishes granted.

I am off to watch a play at the Oldham Coliseum Theatre on Friday called “Union Street”; this play was written by my good friend Ian Kershaw. Union Street is a bitter sweet comedy about young love, broken dreams and the changing face of our town. I am really looking forward to it and will let you all know how it goes later.

10th November 2007:
I am going to a charity party tonight at Lightbowne Sports & Social Club, Kenyon Lane, Moston for When You Wish upon  a Star, This is made possible by the hard work of Sue, Connie, Joan, Chris and Trish.  They have arranged the fund raising night with curry and hot pot supper I am doing a sort speech about Wish and about the wish that I had granted last years. I  am really looking forward to it and it should be a great night.

4th January 2008:
I had a really nice Christmas and Santa was very good to me again this year, a big thank you for all my lovely gifts.

I am now busy getting ready for my big Valentine Ball in February, I could not of managed to have this Ball without the help of my good friends Keith, Pat and Alex Oldfield from the Copy shop, they do all the hard work and all my printing for me, I just get in the way lol...

9th February 2008:
I have had a busy few weeks. Channel M contacted me and asked if they could come and interview me for the Well Child Award and talk about my condition and the charity Ball that I am having. Beverly Walkden came to interview me, she was really nice and great fun to talk too. My camera man was called "Mark" he was really cool too. I was on channel M on Monday 4th February. Beverley and Mark are both coming to my Ball next week, so if you can get Channel M look out for some clips of my Ball on the news.

I was also asked to do a live TV interview for Channel 5 on Thursday 7th February, both mum and I went down to London to do the interview for the Channel 5 News.

I am also in the running for the Champion Children's Award with the News of the World.

14th February 2008:
Getting very excited now, my charity Ball is on Saturday, Keith, Pat and Alex from the Copy Shop in Cheadle have helped me so much to make this Ball a success, I can't begin to find the words to thank them all.

I have been asked to do a live TV interview on Monday morning 18th February 2008 for channel M, where I will talk about how my Ball went. I will be on the breakfast show.

The Manchester Evening News will be covering the story too and coming along on the night to take pictures.

18th February 2008:
My charity Ball went really well, I had over 200 guest including Julie (Haley from Corrie'), Ian Kershaw (actor/writer), the boys from Eton Road, Rowetta from X- factor, The Mersey Beetles and Vince Miller. Guest travelled from as far away as Holland, Scotland and London. some of my doctor's and nurse's also attended.  Lot's of money was raised and I will let you know the full amount when I have collected it all in.
Keith, Pat and Alex Oldfield from the
Copy Shop , Cheadle, were great and worked really hard to make night a success.

14th March 2008:
I am really pleased to say my Valentine Ball raised a whopping £23,000.00 and I presented the cheque to Carole from the wish team on Thursday 13th March along with Eton Road (David, Marcus, Danny and James), Keith and Pat Oldfield who are my sponsors and just amazing people.

8th April 2008:
I had a great Birthday even thou I did not pass my driving test, lets face it I can always take it again so I was not going to let it ruin my big day.

I had so many Birthday cards from all over the Globe (36 cards in total), people who had read my story on Post Pal sent me gifts too, the team from wish upon a star sent me a lovely bottle of Champagne, a teddy and a box of chocolates, my friends from the Copy shop, Pat, Keith and Alex sent me a large bunch of red roses, my friend Emily sent me a teddy, Susanna my friend in the USA sent me a box of teddies and lot's of other gifts. I also received lots of money from family members, as well as gifts from Mrs Ball, Becky and gifts from people who I did not even know, everyone as been so kind and I would like to say a big thank you to you all for making my Birthday so special.

I told Mr. Oxborrow (my spinal doctor) about the book I am writing and he said he would make a contribution to my book by writing a peace for it, which I was really pleased about. I have also spoken to my ambulance drivers who have been taking my mum and me to the hospital every week for the last three years and they would also like to make a comment in my book for me. It's taken a long time to write but I can soon start looking for a publisher who will publish my book for me. I will let you all know when I have some luck with the book.

11th April 2008:
The postman knocked on our door this morning and handed me a large box that contained three balloons wishing me an happy Birthday and a bag of mini eggs, when I read the tag it was from Kate Dee, Kate is one of my friends from Post Pal "thank you" Kate for thinking of me, I love them.

Manchester Hero Awards:
Someone has nominated me for the Manchester Hero Award, I don't know who it was, but  all I have been told is that a few people have put my name forward for the award. I was in the Manchester Evening News on Wednesday, I was in hospital and one of the doctors came up to me and said "we have a celebrity on the ward" and I asked him who it was? and he said "you", he had just read about me in the paper lol... I really thought we had a celebrity on the ward too. I was also on the Channel M, TV, News over the award. I was a little embarrassed because I did not know why I had been nominated really. I find out in June if I have won, so I will let you know then.


25th April 2008:
My book is coming along ok and I have had lots of good feed back from people, all my doctors are going to write in it too, so it will be interesting to read there point of view too.

I have just found out that I am also in the final for the Huggable Bear Hero Award, which is run by the bear factory. I find out in May if I am one of the two winners from the UK to win the award and if I do mum and me are off to Washington DC for four days in July, I also win money for my charity and a scholarship for University, which would be brilliant.

My 1940's night was towards my target to send 30 poorly children and there families to Centre Parc's for five day's in July next year. If anyone can help to raise money for this project please e-mail me, these children are very poorly and need this holiday.

7th June 2008:
I have just found out that I am one of the 25 winners of the Manchester Evening News Hero Award, I will be going to a big award ceremony on Thursday next week and will tell you all about it next weekend. Each of the winners will receive a £1,000 reward, which they will be presented with at a special ceremony on June 12. I am going to use my money towards getting my book published so that it can start helping others with NF and Scoliosis. Click on the picture of me to watch a clip of me that was on the TV when I was told I had been nominated for the award.

12th June 2008:
This evening mum and I went to the Manchester Hero Awards, which was sponsored by Barclays and M.E.N as it prepares to open it’s flagship branch on Market St. The awards honoured some exceptional people from across Greater Manchester. The 25 winners came from all walks of life, from have a go hero’s to another young boy who raise’s money for charity. I felt honoured to be part of the celebration. Kym Ryder presented the awards; we each received £1000, 00 and a framed certificate.

I would like to say "Thank you" to the Manchester Evening News, Barclays Bank and to all the people who nominated me for the award.

13th June 2008:

They say Friday the 13th unlucky for some, well, this was not an unlucky day for me.

Mum said we were going to the Trafford Centre to get my grans teddy from the Build a Bear work shop, when I got there I was busy looking round when the next thing I knew Helen (the manager) came up to me holding a beautiful bunch of flowers and a teddy and told me that I had won the huggable bear hero award for the UK and would be flying out to Washington DC in July to receive my award, which is money for my charity and a scholarship to University, I was total shock and could not believe it. Channel M filmed it all and later interviewed me, which was on TV this evening. Click on picture below to watch interview.

24th June 2008:
I have some great news to tell you, I have passed my driving test. I am now going to take my pass plus driving test, by taking the pass plus test I will be able to get cheaper car   insurance and I'll be an even better driver lol.....

26th June 2008:
Passed my Pass Plus driving test to day and tomorrow is my last day in college until September.

I have still got the City Pennant that is signed by Colin Bell, Francis Lee and Mike Summerbee and comes with a Certificate of Authenticity. The latest bid on it is £100,00 so if anyone wants to offer me more please get in touch. All the money raised from this item will go towards my next £60,000. target to send 30 very poorly children and their families on a five day holiday to Centre Parc's next year.

4th July 2008:

I am off to Washington DC on Tuesday morning with my mum and I will tell you all about my visit when I get back.

8th July 2008:
Mum and I are off to Washington, DC this morning for the Huggable Bear Hero Awards so it was up at 5.30am for us both as we have to be at the airport for 7am. Dad arrived home early from his night shift so that he could take us.

I had been told that one of the Build a Bear Associates was going along too and that his name was Chris, he was traveling from the same airport as me so I knew he would be on the same flight, I had been told what he looked like and when I arrived at the airport both mum and I saw this young man stood with an older guy we looked at each other and both said “Chris”. Me being cheeky went up to him in my wheelchair and asked him if he was called Chris to which he replied “Yes” looking at me in amazement, I then said from Build a Bear and he said “Yes”. So I introduced myself and my mum and we stayed together for the rest of the journey.

The flight over to New York was really good the food was nice too. But we had a four hour delay with our connecting plane. So we were all very tired after just having a seven hour plane journey. When we eventually boarded the plane in NY it was really small and I got out of my wheelchair to board the plane, mum was told to leave the wheelchair at the side and that they would fold it up and make sure it was put on the plane, unfortunately they had problems trying to fold it and a member of the crew had to get mum to do it. As mum got up she bumped her head on the over head baggage compartment (shows you how small the plane was), I know shouldn’t of but I went in to the fit of giggles along with half the plane, “Poor mum”. Mum folded the chair and we were on our way finally getting to our hotel at 10.30pm Washington, DC time, so it was like 3.30am for us and we had been up almost 24 hours.

We were picked up in a limo’ and taken to the hotel where we were met in reception by a very nice lady from Build a Bear, she asked us to order a meal and drink and that she would see us in the morning. When I went up to our room there waiting for me on the table was this basket of goodies from Maxine Clark. We were really tired and managed to get a great nights sleep, the beds were so comfy.

9th July 2008:
We were up early as we had to be at breakfast for 7am due to the busy day that we had ahead of us. After mum and I had finished breakfast I just had time to head back to our room and get showered before it was time for my photo shoot. I was told I would feel like a star for the day, which I did. I had my hair and make-up done before heading over to the stylist who had a selection of clothing and trainers for me to try on. I chose this really cool multi coloured jacket, a green top, pink trainers and a pair of sweat jeans (the jeans cost over £100.00). A few weeks earlier I had picked and dressed two teddies, one that represented me (I put a blond wig on it, holding an i-pod) and one other teddy just for fun. I was photographed holding one of the teddies. While I was busy doing my photo shoot mum was being interviewed in this other room about my charity work and about me (I hope she said some nice things lol..). After the photo shoot I was told that I could keep all the clothes that I had chosen apart from the jeans as they had only borrowed the jeans for the shoot and they had to give them back, they were really comfy too. Photo shoot and time for me to do a quick interview.

By now it was getting on for 11.30am and almost time for lunch, we were all to meet in the Capital Room C in the hotel as we were having a Lunch N’ Learn as a Group. We had the opportunity to meet and learn from some of the beary special partners with whom Build-A-Bear Workshop works.
I also got to meet all the other 2008 Huggable Hero’s, who were:

Anna – Colorado, Austin – Arizona, Aymeric  - France, Christina – New York, Dallas – Washington, Emma – Nova Scotia, Jack – Oakville, Michala – Kentucky, Rocco - New Jersey, Jasmine – California, there were also two Associate Huggable Heroes who were: Christopher, Warrington and Laura, Wisconsin. There was one other winner Malka – London but Malka was unable to attend the awards. Each one above names have done something good for there community, which is why they have been honoured in this way.

After lunch I attended a Leadership Symposium with some of the other Huggable Hero’s, we all participated in a special leadership symposium with a lady called Kathy Cramer. We got into two groups and worked together as a group. The Leadership Symposium lasted about two hours.
By now it was 4.30pm and mum and I were free to relax for two hour. We went for a little walk around Washington DC but not knowing the area we did not want to go to far and both being on crutches we could not go far anyway. We did attempt to find the White House but went the wrong way.
We all had to meet in the hotel reception for 6.15pm as we were going to the Hard Rock Café for tea. By now all the previous five year Huggable Hero Winners had arrived to mark the fifth year of the awards. Lots of hugs were being passed around, which was nice to see.
The Hard Rock Café had stained-glass windows and honors the rock-and-roll greatest stars. It was really busy and we waited a while for our food to arrive. We got back to the hotel about 10.30pm and all decided to meet up in the hotel swimming pool where we stayed until midnight, mum and Debbie sat in the hot tub by the pool.

10th July 2008:
Breakfast was not as early this morning so we got a little to lie in until 7am and down for breakfast at 8.00 am. At Breakfast we were joined by Millicent Williams Executive Director of Service DC.

After breakfast all Huggable Heroes from this year and the previous four years departed to do some community service activity. We all got a turn at painting a beary special mural at Lackie Elementary. For lunch we all sat in a big group having a picnic lunch. Leaving our mark in Washington, DC felt really good.

We got back on the bus for a special sightseeing tour of the Washington, DC area. We saw the White House, the Lincoln Memorial and Washington Monument and other classic sights.

Getting back to our hotel for about 4.00pm, which gave us two hour to relax and get changed before heading off for the Huggable Bear Hero Awards. The awards took place at the Top of the Hill with Chief Executive Maxine Clark and Olympic Gold Medal Gymnast, Dominique Dawes, who served as the evening’s emcee and Michelle Rhee, Chancellor of the DC Public School system who was one of the keynote speakers.

The room was done out beautifully and each table had two teddies on it. The meal was chicken and tasted really yummy. After everyone had finished their meal each one of this years Huggable Heroes were called up to receive their award from Maxine Clark. I was first up and while I was going up for the award Dominique Dawes spoken about what I had done to receive the award as she did for each of the heroes. The evening was very interesting and memorable.

We got back to the hotel about 11.00pm and after having a chat in the hotel reception we decided we would all meet back down in the hotel pool for one last splash about. We went back to our rooms at about 12.30am.

11th July 2008:
We were up early for breakfast I had a quick chat with some of the new friends that I had made and then went to get some gifts to take back home while my mum went to do the packing. I was given four new teddies, a set of clothes, a book, which Maxine had written and lots of other nice things, mum had a bit of job fitting everything in the case.

We were picked up at 12pm to take us back to the airport in the biggest Limo’ I have ever seen, there was fifteen of us in including our entire luggage and my wheelchair, so that will give you an idea of how big it was.

Chris and his dad, Nigel were on the same flight as us so we stayed together. We got back to Manchester just after 7am Saturday morning.

The last few days have been amazing; everyone involved went out of their way to make it memorable. Both mum and I met and made friends with some pretty amazing people from all over the Globe who we now intend keeping in contact with.

I would like to say a big thank you to the following people:

Maxine Clarke, Kate Zeidman, Samantha Fisher, Harriet Blickenstaff, Jacob Blickenstaff, Jill Saunders, Kristen Hanneke, Jay Beauvais, Jakie Bauer, Teresa Kroll and Nicole Spiegel. I have got a feeling I may have missed one of the guys out and I'm sorry if I have, but you were all wonderful and I hope that mum and I get the pleasure of meeting you all again some day.

Looking forward to seeing the Build a Bear calendar when it comes out later this year.

29th July 2008:
This evening my Mum and I were invited to the Didsbury and District Rotary Club meeting where I was presented with the Charles Austin Volcational Service Award. The award is named after the late, long serving and much respected, honourable member of the Rotary Club.

I was nominated for this award by members of the Rotary Club, which made even more special. The evening started with us having a three course meal followed by coffee. Linda made a speech about why I was being given the award (which I have included in my book) and presented me with a Certificate, £200,00 for my charity, a portable DVD player and a bunch of flowers. Linda then passed over to Phil, Phil said a few words and then presented me with another Certificate and a cheque for £100,00 for me to take my family out for a meal.

The evening was very interesting and both my mum and I were made very welcome.

1st August 2008:
I have got a lot of exciting things happening over the next few months so please keep visiting my web page where you will be able to continue to follow my life with Neurofibromatosis, Scoliosis and all the fun things I get up to.

8th August 2008:
I am just waiting for my doctor to send me their input to my book
  and then I am ready to send it off to my first publisher. I will keep you all informed on how it is going. I know a lot of you have e-mailed me to ask when will the book be published but I will let you all know when I have any more news, I think I will scream it from the top of the world.

15th August 2008:
My picture (head and shoulder) is to be transformed into a 1960’s pop art style image. The design called localHeads will use photographic portraits and put them up in lights in a 60s pop-art style, which will then go on display as part of a quarter mile long archway of faces which will take pride of place along Blackpool’s promenade throughout the Illuminations season.

I am one of six chosen by Granada Reports. I will take pictures as soon as I can for you all to see.

19th September 2008:
I have just returned from my two week trip to Disney World Florida with my Mum and Dad, there is so much that people take for granted when taking a holiday, which can be a huge hassle for us.
For example before I was even allowed out of the country I have to be insured and documents need to be signed by my Doctor so that I can take my medication out of the country, then I have to make sure I have got leg room on the plane because I can’t bend my legs with the braces on.  But everything went well and I had the time of my life. Disney world was fantastic and we had so much fun. With the incredibly infectious songs that play again and again throughout the Disney parks. We got to meet Mickey Mouse, Pluto, Goofy, Mini Mouse and lots of other Disney characters.

We also met up with some good friends of ours, Andy, Melissa, Amie and Louie, it was great to see them as we had not seen them for a while. We also met with Melissa's mum who was over visiting the family. Andy, introduced us to some of his friends (Ryan and Mike) who I will tell you more about as I tell you about my holidays.
After having tea and cakes with Andy, Melissa and the children, Andy introduced us to Mike who owns a Segway business in Celebration and after giving mum, dad and I a course on how to ride a Segway Mike kindly took us all out on a one and half hour ride round Celebration and on to a nature trail. I was surprised at how well my mum did on it, dad on the other hand needed the most training. But like all men he kept making

Epcot is one of my favourite Disney parks.  It allows you to travel round the world to China, Japan, Germany, Great Britain, and other countries without leaving the USA or the need for a passport.  

We went on lots of rides and my mum even went on Test track(a fast ride for my mum).  I will not be going on Mission Space again... I don't like getting motion sickness, dad felt really ill when he came off this ride and so did Robert a friend of Ryan’s who came with us too, mum had already decided she was not going to ride it and sat and had a coffee with Ryan while they waited for us to finish the ride.

Magic Kingdom has gone from my second favourite park to my favourite park (just in front of Epcot).

Magic Kingdom is situated on its own Island, so to get there, you will have to travel by monorail, or the Mississippi steam boat. We used the monorail.

There were characters all over the park in designated spots, and the queues were well managed. I managed to get the autographs of some of the characters and then had photo's taken. As you stand at one end of Main Street, and look towards the centre of the park, Cinderella's Castle is the first thing to strike you. We all went on the Splash Mountain ride and I wanted to sit at the front with my mum we both got really wet. It is a log flume style ride which starts inside through a character village with cartoon type alligator, and then heads outside for the ride. Prepare to get very wet. I went on Thunder Mountain railroad, which is like a runaway mine train. Mum and Dad would not come on this ride. Then we went on the Haunted Mansion ride. You sit in a car and it takes you round the mansion and out into the garden. At one point, you come across a mirror and there is a ghost sat in the car with you, certainly good for freaking out young children.

We went on lots of different rides and had a brilliant day. Towards the evening we lined up to watch the Parade, which was great fun and lovely to watch the colourful fibrotic floats, the many Disney characters and beautiful music that they had playing. We then watched the fireworks, which looked over the colour changing Castle.

Typhoon Lagoon, which is a water Park and an amazing park, we had an awesome time here! The rides were crazy, mum enjoyed the Lazy River, it was a perfect way to relax.
We also decided to go to Blizzard Beach to ride the water slides and play in the pool.  Our first stop was to find a place to “camp” – a term that means to have a place to return to when we want to rest.
Our first ride was the Double Tube slide. It was great. The walk up the mountain to get to the entrance of the slides was a bit too much for my mum and me. Mum and I were looking for the oxygen relief at the first set of stairs!  However, the slide was well worth it! 

Next it was onto the Toboggan Racer Slide with my dad.  This was incredible!  You lie down on your belly and use the more traditional water slide mats – except these have handles, which you need to hold on to and you literally fly down the slopes.  Eight lanes of racers launch each time down straight lanes that drop at different intervals.  We were exhausted.  Each night before we went to bed we said we were getting up early the next day, but each morning, we did not get up until at least 9a.m.

We went on a ghost hunting tour of Kissimmee and managed to get some really cool pictures.  I really did have a great holiday. but I missed my brother.


Me having some funnel cake

Me with the High School Musical

2nd October 2008:
I am fundraiser of the month on I was nominated by my mum (thank you very much mum for nominating me), and the guys at Justgiving’ donated £25 on my Justgiving page for my When You Wish Upon a Star Appeal. You can read what they wrote about me by visiting:
Fundraiser of the month, September 2008. Thank you to the guys at justgiving for picking me as their fundraiser of the month and for the £25.00 donation. I would also like to take this opportunity to thank everyone who has kindly made donations on my justgiving page, you really are helping to make a poorly child's dream come true. "Thank You".

This is the picture of me, which has been transformed into a 1960’s pop art style image and is part of Blackpool lights, which is placed along Blackpool’s promenade throughout the Illuminations season. The guy on the top left of me is one of the other winners and the pictures at the bottom are of Tony Morris and Lucy Meacock who both present Granada Reports News.

27TH October 2008:
I was asked by the Build a Bear work shop if I would go and help with children in Need fund raising event they were having at the Trafford Centre on Wednesday. The morning went really well and the young children had a great time playing games and dancing about. I had my face painted to look like Pudsey Bear.

27th November 2008:
I have been nominated for the Manchester Community Award and have just found out that I am in the finals and will be attending a presentation evening on the 10th December when I will find out if I am one of the winners.

On the 11th December I am in a performance at college, which I will be marked on for my grades, I should of been in a performance on the 10th December too, but my tutor "Pete" kindly allowed me to have the evening off so that I can attend the awards evening. "Thank You Pete". I will let you know how the evening went.

10th December 2008:
I attended the Manchester Community Awards this evening with my mum and good friend, Lesley. I was in the final three to be named The Young Citizen of the Year.

The finalist were honoured at a glitzy Town Hall ceremony, hosted by the Lord Mayor of Manchester and Gordon Burns off BBC North West Tonight.

The event was made possible by generous sponsorship support from a number of Manchester businesses which provided services to the communities of Manchester and have a commitment to improving the quality of life for residents.

A special champagne reception for all the guest attending the glamorous ceremony was hosted by Xerox, in the Lord Mayor's Parlour.

I was shocked when my name was called out as the winner. I received a large glass trophy with my name engraved on it and £300.00. My award was sponsored by Northwards Housing.

Martin Joyce, Managing Director of Enterprise Manchester, who sponsored the Pride of Manchester Awards said: "Enterprise Manchester are very proud to award Gloria Barnwell the Pride of Manchester in recognition of her invaluable contribution to Manchester's communities". He also referred to the unprecedented decision they made to award an extra "runner up" in the category, adding: "We are also very pleased to make a special commendation to Kirsty Ashton in the Pride of Manchester category, for her remarkable achievements in the face of adversity." For this I received a further £250.00, a framed certificate and a £500.00 donation to my charity. I would like to say a big "Thank You" to everyone involved in the awards, the night was most enjoyable and well done to all the winner's and runner ups , it was lovely being in a room full of so many wonderful people.

The entertainer for the night was "The Crooner", if you have been following my blog you will know that Tony, The Crooner attended my first charity Ball, he is such a great guy with a fantastic voice. It was lovely to see him again.

11th December 2008:
Tonight was my college performance, why is it you always get a cold when you have perform in front of people. Lol….. Never mind, it went well and everyone enjoyed the evening.
See some of the picture's from the play below.

It’s been a mad few days, my gran was also taken into hospital with a chest infection, but pleased to say she is much better and came out of hospital on Friday. She's still got a bad chest infection but at least her temp' his down now.

17th December 2008:
Yesterday I was given the biggest surprise of my life, I went to college like any normal day, dressed like a scaly, I had this nagging cold, so did not really feel like lessons. Peter (my tutor) asked me to lead the lesson, I was doing my work when Calvin Valentine (Ricky Whittle) entered the room with a camera crew and said "I'm looking for Kirsty Ashton", I was like eer, eer, "Hi!" He said "do you know why I'm here?" I said "No", he said "well come over here and give me a cuddle". He said that I had done so much for other poorly children, that they had decided to do something for me and that he was going to take me to Liverpool to look round the Hollyoaks set and I would meet the cast, I was buzzing. I went in Calvin's car to Liverpool (some cool car that he's got I can tell you).

Ricky showed me round the Hollyoaks set, which was being filmed the whole time, he then said I hear you like Andy who plays Rhys, I was like errrm, no comment, I you are all fit lol...

Calvin introduced me to Newt (Nico Mirallergo), then Rhys spoke to me and I was all googly eyed. We had some pictures taken before going for dinner. After dinner I went and watched Calvin do his scene. Calvin then surprised me and told me that I have been given a part in the pub scene with Rhys and Gilly, I was like WOW, I was given my script and asked to learn my lines ect while I was in make-up. I had to flirt with Rhys (not a difficult job for me), Rhys rubbed it in because he knew I liked him, when we went off set the cameraman asked for pictures of us both, Rhys was going in for the kiss and then he fell and the cameraman went we might have one of it looking like your going to kiss lol. Then there like, keep in contact ect' and hopefully see you back here one day.

I spoke to the director, he said he was impressed and that I was easy to work with ect' so you never know I could be a regular one day lol... After my scene we ended it off with a bit of me waiting in the pub and then the lovely sexy Calvin came in the pub in his uniform, it was an image to die for, I was like OMG, OMG, I am going to faint, he looked soooo fit, but I love them all, they are all brilliant. Hopefully we will stay mates and stuff and I'll see them on set again some day. I have heard from Andrew (Rhys), Anthony (Gilly) and Sonny (Josh) since I have been back.

I cannot tell you all what happens you will just have to watch Hollyoaks, I will let you know when it goes out on TV. I really did have the best day of my life and I would like to say a big thank you to everyone involved in making my wish come true (you can see some more pictures from my day on my picture link). To act on Hollyoaks was on my wish list in my book. I can now tick that one off. But I would love to do more acting on Hollyoaks, I loved it so much. I met some of the nicest people, I cannot remember all your names so thank you to everyone. Paul Young, Jay Morris, Ricky, Andrew, Nicole, the camera crew and all on Hollyoaks for giving me a brilliant day.

Filming outside college with Ricky Whittle


Ricky and Me


Ricky and Me

Andrew Moss and Me

I hope you all have a great Christmas and New Year, I’m sure Santa will be good to you all and remember if you have a spare penny or two and would like to make a donation please click on my Just giving link, which is a safe and secure way to make a donation. I would also like to say a really big thank you to everyone who has kindly made a donation to my next £65,000 target to send 30/40 poorly but very brave children on a five day holiday to Centre Parc’s with their families. Some of these children will never of had an holiday like this so it’s really important that I achieve this for them.

I am pleased to say that 100 poorly children and a parent have just had a magical trip to Lapland to see the real Santa with the last £65,000 that I raised. Please help to keep the smiles on some of the bravest children in the UK. Maybe you can give me some ideas for fundraising, any ideas you have please just email me.

6th January 2009:
I am still buzzing from my trip to Liverpool and don't think I'll believe I have been on the Hollyoak's set until I have watched it on TV. Not got the date for when it is on yet but I will be sure to let you know. I am also just waiting on confirmation on the date that I am going to be on Noel's HQ (can't wait to meet Noel), mum loves him too and watches him every night on Deal or No Deal, we both applied to go on it some months back, but not heard anything yet lol.. Anyway the dates I have been given for Noel's HQ is Saturday 17th January '09 or Saturday 24th January '09, Noel's HQ is on Sky, again keep an eye out for the date.

13th January 2009:
am on Noel’s HQ on Saturday night the 17th January at 7.30pm, you can watch Noel’s HQ on Sky 1 virgin 121, Sky 106 and HD 170. I am really looking forward to meeting Noel and being on the show. I am also in the Sun News paper one day this week and I think the Daily Express on Saturday 17th January.
A lady came and did my make-up this morning before I had some pictures taken for the Daily Mirror news paper, so I know I’m going to look ok on them lol…

18th January 2009:
I had a fantastic time on Noels HQ on Saturday.
When we arrived at our hotel we had a bit of bother with the room as it only had one bed in it, but they soon changed our room for us and they apologized for what had happened.

After getting a good nights sleep, I wanted to visit the National Portrait Gallery as I am doing my A level's in Photography and came away with some good ideas to help me when taking pictures.

When I got back to our hotel I had a little rest before going for a quick shower and change of clothes. Mum got a call to say our car would be with us in 5 minutes. When we arrived at the studio's our car was met by Paul Young and Jay Morris, People had already started to queue to come in and watch the show and the show was not for another two hours.

I felt like a star as both Paul and Jay kissed me on the cheek and took me inside. You can imagine my surprise when I was shown my own dressing room with my name above the door. The room was huge and had a TV, video, toilet, shower, fridge (which was filled to the top with drinks), the room was huge as you can see by the photo's, Noel was in the next dressing room to mine, I so much wanted to knock and ask him who the Banker was lol..

Paul, Jay, Nicole, Ross and lots of other people kept coming in to make sure we were all ok and asking if we wanted anything. I was then taken to make-up, I had to look glam before going on TV.

We were then seated in the Studio ready for the show to start, I began to feel nervous and my hands were shaking. I was first on so I was then taken back stage ready for Noel to call me on, I will let you watch the clip from here, just click on the picture of Ricky and me and sit back and enjoy.

Keith Chadwin, Me and Noel Edmonds

Me with Neil Fox

Jay Morris, Me and Paul Young
two great guys who looked after
my family and me really well.

Me having a quick 40 winks before going
on Noel's HQ.

Me in my dressing room.

Ricky and Me
Click picture to watch video.

After the Noel's HQ had finished everyone who had been on the show including the stares and crew all went back stage for drinks and food. Neil Fox came chatting to me and congratulated me on raising so much money. I got lots more hugs of Ricky (I am now in love). I could not believe it when Noel said Ricky was here too as you will have seen by my face. Ricky is such a nice guy and gives really nice hugs. I chatted with Keith Chagwin and Noel, mum asked Noel who the Banker was and he said "sorry' can't tell you, not even for you" lol. We had a really nice night and everyone was so kind. I had something money just cannot buy, a part in Hollyoaks and I would like to thank Noel Edmonds and Ricky Whittle and everyone involved in making my dream come true. By the way Ricky Whittle, "I love you".

I have had lots of feed back from people saying how I have inspired them to do something for charity, if everyone did a little something the world would be a much better place.

20th February 2009:
Yesterday mum and me went to London where I did a fashion shoot for the Daily Mirror, my hair and make-up was done by CB (Clair) and I was styled by Oriella Paganuzzi, I had a brilliant time. My pictures were taken by Emma Cattell who made me feel so relaxed when taking my photo. All three were really nice and made both my mum and me very welcome, they even made butties and kept us drinks all day.

27th February 2009:
What a busy day I have had today. My day started with me doing a radio interview with BBC 1 Radio Manchester, I was on 7.30am breakfast show with Eamonn O’Neal and Dianne Oxberry. I spoke about the book I have written, my appearance on Hollyoaks and about the fundraising that I have done for When You Wish upon a Star. Off air we had a little private chat (see pic’s below).

In the studio with
Emanon and Dianne

Emanon O'Neal and Me

 Dianne Oxberry and Me

Then my brother took me to London as I had an audition at 1.30pm and another audition at 2.45pm. it was a good job my brother was off work and able to be my taxi for the day, I would not of been able to do both without his help. “Thank You, Chris” you are a great brother.

Checkout what I have coming up to raise money over the next few months on my events link and if you have time come a long and join in the fun.

17th March 2009:
Today I was in the Daily Mirror, I was given a full centre page spread. The Mirror had arranged for me to do a photo shoot to help me with my modelling and TV work. I was contacted by a number of magazines who also want to cover my story after reading about me in the Mirror. I am talking to them at the moment and will let you know more when I can.

27th April 2009:
Now for some good news! On Friday I went to Edinburgh as I was nominated by Linda and Phil from the Didsbury Rotary Club, for a Rotary Young Citizen Award and was one of the five winners to receive the award.

It was really nice to get away for a few days. It was a long drive but we stopped at the service station for food and drinks, we didn’t arrive in Edinburgh until after 4pm,

On the evening we arrived I went to see McFly in concert with one of the other winners (Leanne), Leanne’s parents and my mum. I had to be at the Corn Exchange for 6.45pm. When I arrived at the venue I was given the surprising news that I was to meet the boys from McFly. Both Leanne, her parents, my mum and me were taken round the back of the venue and introduced to the boys, they were great and after giving us a big hug they chatted about why we had been given the award, they were shocked when they were told how much I had raised. We then had some picture taken before going to watch the boys on stage with all the other girls screaming in excitement. I was surprised when McFly mentioned me on stage and everyone clapped and cheered me when McFly had finished talking about me.

On the Saturday morning we had to be at the Corn Exchange for 10.15am so that I could have a quick interview with Konnie Huq who was presenting the awards live on the BBC News 24. Konnie was a presenter on Blue Peter for ten years before leaving the show last year. We arrived at the Corn Exchange just in time thanks to Linda’s good driving and my good navigation system around Edinburgh, which was a nightmare to drive round due to all the road works they have going on at the moment.

I met with the other winners before being sat on stage ready for the awards to go out live on the BBC News at 11.30am.There were over 2000, Rotary members from all over the world in the audience, I was a bit nervous as I had just been sick before going on stage and was worried in case it started again while I was on stage. I was the last winner to go up and Konnie asked me a few questions and showed a short film about me as Eve had been to film me in hospital the week before and had also filmed the girls from Wish Upon a Star and one my doctors, Mr. Neil Oxborrow. I managed to make the audience laugh a couple of times with my answers, which is always a good thing. I received a lovely glass trophy and a certificate and I am told I have also got £500.00 to come to me for my charity, which will go towards my target. After the ceremony we had lunch and some more pictures taken on stage. Lots of people kept coming up to me and congratulating me on my award and some gave me money towards my next target, all in all I was given £80.00 for my charity. One man even gave me his business card and said he may be able to help get my book published, I have emailed him today so we will see. I would like to say a big thank you to: Mike, Sue, Ann and the other lady who gave me money for my charity.

Then mum and I went into Edinburgh to do some shopping while Linda and Phil went back into the afternoon Rotary event.

While mum and I was out I saw the Top Gear presenters, Richard Hammond, Jeremy Clarkson and James May, mum asked if I could have my picture taken with Richard but this woman said “No” but I still took some of Richard and Clarkson. Linda than rang my mum to say she was on her way to pick us up so that we could all go for tea before heading back to the Corn Exchange to watch a concert. It was a Scottish Variety Performance. I had arranged to meet Leanne (one of the other winners) at the concert and we all sat together. I must say we really enjoyed it. The show finished about 11pm, I was shattered by the time we got back to the guest house.

I kept ringing my dad to find out how my 1940’s event back home was going as I had left dad in charge of the raffle for me. Dad rang me when I got back to the guest house to say the raffle had raised £390.00 with money still to come in. Thanks for doing the raffle for me dad.

Before going home on the Sunday we went to the morning Rotary Conference, which was really interesting. The RT Hon Michael Portillo did a speech and told some really good jokes.

Then it was time for the long journey back home. A massive thank you to Linda for all the driving she did and Phil and Linda for looking after us so well over the weekend and of course for nominating me in the first place.

23rd May 2009:
Last Saturday, mum, dad, and me went to the Chester football club to watch the Hollyoaks lads playing football against other soap stars. The Hollyoaks team included my man Ricky Whittle (Calvin), Nick Pickard (Tony), James Lomas (Warren) and lots of other cast from Hollyoaks. They played against some of the cast from Coronation Street, Emmerdale, Shameless, Casualty and the Bill. They were playing to raise money for two charities.

We all had a great day even if it did rain. All the guys came round and chatted with us after the game and I got a big hug off Ricky when he saw me.

I am trying to arrange to do a Spookathon, which would mean me staying in a haunted house over night. I have got some of my ambulance drivers and some other medical people who are involved in my care willing to do it for me so if I can pull it off we should raise lots of money. Keep an on my events for charity link for more information.

12th July 2009:
Since I last up dated this page I have been back to see Mcfly in concert in Nottingham with my friend Leanne, we both had a brilliant time, I stayed over at Leanne's for the weekend as she lives in Nottingham. Thanks to Leanne's parents for making me so welcome.

I am doing my spookathon in November and hope to raise lots of money for my charity, if you would like to sponsor me, you can by donating on my Just giving link. "Thank You".

I have passed my exams and I have been excepted into Chester University to study TV/Radio Media, mum and dad said they are very proud of me as I am the only one in the family to ever have gone to University, which made me feel really happy.

Next week I am going to our local Rotary club, where I have been asked if I will do a speech about my condition and the charity that I raise money for, which should be interesting.

8th October 2009:
Since my last update I have been over to Florida with my mum and dad, we had a great time. We met up with our good friends Andy, Melissa and children, Amie and Louie, we had not seen the children for a year and it was great to see them, Amie was so big and Louie was chatting away. Melissa came ghost hunting with us, which was great fun, dad got us lost and we could not find the car.

Visiting one of the water parks dad went swimming with the car keys and lost them, luckily someone found them and handed them in, but when we tried to start the car it was having no go and we had to sit in a car park for over an hour until we had another car brought to us, we could not go back in the water park as it was getting ready to close so we baked in the sun for over an hour.

You will never guess what my mum did, she forgot to pack my Gabapentin tablets, which I have three times a day for the pain in my back. We tried to buy some but was told they could only be got on prescription, my brother, Chris, was going to post them out using the next day delivery, but when he told them what was in the package he was told he could not post them, he even contacted the Embassy to explain things to them but the person he spoken to was unsure if they could be posted to the USA. In the end I had to use my Ketamine, which makes me feel dizzy if I have it in the day, I normally try and only have my ketamine when I have gone to bed.

Then my mum had an accident, we were attempting to play crazy golf, I had my go and so had my friend, then it was mums turn and as she picked the golf ball up her knee gave way and she fell back smacking the back of her head on a concrete path (she was seeing stars), we heard the bump and dad just came over and said "look I got an hole in one", and I said "and your wife as just smacked the back of her head". It did look funny seeing mum lay with her legs in the air and I am sorry for laughing mum. My friend went and got an ice pack from the people who owned the golf course. Mum had a big lump on the back of her head for the rest of the holiday.

9th November 2009:
University is going ok, hard work but good fun too. Well, what do you think of being on a billboard with my gran (see pic' below), now you can see where I get my good looks from, my gran is lovely.

This is me stood by the billboard that is on one of the bus stops on Altrincham Road, Manchester. Cadbury's Wispa Gold asked people to write in and tell them about someone they love and that they would pick so many of the entries and put them on billboards around the UK. As you can see mine was chosen. The picture is of my Ronnie Gran and Me and the words above the picture read as follows:
Instead of me whispering
I will shout that my gran is the best,
better than all the rest,
She is sweet as chocolate and
she will sell you out of business
as she’s my world.
But you are the gold.

I have got three billboards up, one on Altrincham Road, Manchester, one on Folly Lane, Salford and one on Chester Road, Trafford. My Gran could not believe it when I showed her and gave me a big hug.

17th November 2009:
Remember back in April when I told you that mum and I went to Edinburgh as I had won the Rotary Young Citizen Award after being nominated by Linda and Phil from the Didsbury Rotary Club. Well, if you click on the picture below you can now watch the video clip of the other four winners and I, this was on the national news.

2nd December 2009:
I was invited to 11 Downing St in London to meet The Chancellor of the Exchequer, Rt Hon Alistair Darling MP. received the Diana Gold Award along with nine other young people who had all won the Diana Award over the past ten years and the gold award was to mark the tenth anniversary of the Diana awards. Over the last ten years the Diana trust has awarded 27.000 awards to young people. We had drinks and food with some other guest, including the Chancellor's wife, Maggie Darling and Bee Gee Robin Gibb, who is an ambassador for the Diana awards.

I was the seventh person to go up for the award, I was given a framed certificate and a lovely glass trophy. I also gave a small speech and lots of pictures were taken for the press.

Click on the picture below to watch my TV interview about the award and my spook night.

Receiving my award

Me outside No 10 Downing St

he spook night was really good, It’s hard to believe but lots did happen and when the channel M guy (Ben) was filming a fire extinguisher came flying off the wall but they could not show it as a couple of people swore in shock, one guy got scratched on the back of his head, which must be 4ins + in length, we had some pebbles slung towards us and other people experienced some things too.

I had my spook night at Hyde Town Hall and would like to say a big thank you to the Manchester Paranormal Team, Darren, Peter and David Sarsfireld, Lloyd Pennington, Chris Body and Ian Landregan plus Phil, Ernie and Dan for giving up your time to help make my spook night a success.

I would also like to say a big thank you to Darren Sarsfield , Ernie Warburton and Ian Landregan who took part in a sponsored walk to raise the money needed to rent the Town Hall for the night. Other people I would also like to thank are Danny Morris, Paul (Danny’s agent), Channel M’s camera man Ben Bangbala, Claire Mitchell also from Chaneel M, Eamonn O’Neal and all my friends who came along on the spook night to support me. I would also like to a special mention to Paul who agreed to do a lone vigil in the strong room for half an hour and raised £100.00 by doing it.

The night raised lots of money for When You Wish upon a Star and I would do it again. I will let you know how much money when I get all the sponsor money in.

Some pictures below from the night plus click on the picture to watch a clip from Channel M.

Danny, Me, Alex and Tom

Danny Morris

Danny and Me

15th January 2010:
I had a great Christmas with my family and it was nice to spend some more time with my Gran (my mum’s mum). Gran got herself this dog called “Biscuit” (see pic’s below), I love it and so does my gran, you ask it to sit and give you it’s paw, it will, ask it lie down and it will, it also barks and whimpers, it really is very cute. My gran is so funny with it and keeps telling me that it is keeping her awake at night with its barking.

We all know that we have had lots of snow and on our first down fall of snow I made this big snowball.

I have also been a member of Post Pal for many years and I have received lots of nice gifts from people who have read my story, one lady (Wendy) read that I was on crutches and she bought me some really cool blue crutches for Christmas, they are so much nicer than the ones I had.

We also went to the annual quiz night that our friends Keith and Pat have every year for all their friends at Christmas (Keith and Pat have helped me lot over the years by organising the charity Balls that I have had. They own a printing business and do all my printing) it was great to see Keith and Pat as I have not seen them for a while and Andy and Melissa had come over from the USA with the children (Andy is Keith’s and Pat son), Andy always does the quiz and very good at it he is too. Alex, is their other son and I have not seen him for a while so it really is nice to get together with everyone and one of their friends makes the nicest hotpot ever.

I took my mum and friend, Lesley, to watch Jermy Kyle being filmed last week, which was really good fun and next week I am going to watch the TV Awards in London, which I am really looking forward too.

I still don't have any news on my book, but I am still keeping my fingers crossed that I can find a publisher so I can get my book on to the selves so people can read about Neurofibromatosis (NF) and Scoliosis. I know I have NF in a bad way internally, but life goes on and I want people to read my story and understand what I have been through and still am going through. I may have NF, but I am not going to let NF have me. One day I will get my book published and if my book can help just one person it will be worth all the hard work that is involved in writing my book.

14th April 20010:
I had a really nice Birthday and received so many cards and gifts, a lot of my cards came from Post Pal who send gifts and cards out to poorly children.

I have found a publisher for my book and fingers crossed it should go on sale in July, so keep popping back for news when my book will go on sale.

I have been short listed in the category of Gill Astarita Fundraiser of the Year award and will be going to the awards in July. Gill Astarita Fundraiser of the year award is for the fundraiser, who in the view of their peers, has shown consistent excellence and best practice in achieving high=quality fundraising through either their own efforts or their vision and strategy.

29th April 20010:
My 1940's charity night went really well and I wont to say a big thank you to Alan and Lesley Bates who helped me with the event. The raffle items that I got managed to raise £805.20p so another big thank you goes to everyone who attended the event, it was really nice to see so many people dressed in the 1940's outfits.  Titch (my mascot) was a great success with both children and adults. I am sure we will be seeing a lot more of Stitch.

I have got my exams at the moment and looking at what my next event will be, I have also got some mobile phones that I need to send off.

I am still waiting on news of when my book will go on sale, but as soon as I know anything I will let you all know.

13th May 2010:
When I got home from hospital this afternoon I had a letter that had come for me from Buckingham Palace, when I opened it, inside was an invite to the Queens Garden Party on the 22nd June for both my mum and me. The letter states that we must wear a dress and a hat and unfortunately we cannot take any pictures as they will not let you take your camera in to the grounds of the Palace. But I will tell you all about it on our return. I have had tea with Prince William and Harry and now I get to meet the Queen, how cool is that..

This is our invite,
but not the tickets.

28th May 2010:
I have been out and bought my outfit for the Queens Garden party, I even got my hat. The hat that I bought when I was out with my friends last week my mum said it would not do and that it looked like I had a butchers hat on, mum said, it just looks like the one that Graham wears in Corrie'. I could see what my mum meant, my mum took it back for me and got me a different one. Well, I don't wears hats and it's not every day that you get invited to the Queens Garden party.
Just working on how we are going to get there at the moment as my dad is working and can't take time off work. Looks like it will be the train, just worried about the sickness on the way, if I am in the car and start being sick it's not so bad, but it's not nice if I start being sick in front of other people and it comes on so quick that I can't just get up and run to the toilet so I have to keep a bowl at the side of me. Only other thing I can do is not to have anything to eat or drink and I will be ok.

23rd June 2010:
Yesterday I went to the Queens Garden Party with my mum, which was a great experience. When I woke up and I was really excited I never slept well all night. When I got up I tried on like 6 dresses as I had bought so many and 5 minutes before the photographer came I got changed again.

I was then happy with my choice. When the Bentley and David (my Chauffeur) arrived, I was so excited and when I seen how beautiful the Bentley was, I was made up, I was do happy and felt privileged that someone had organised this ride for me. I loved the smooth ride there and back, and it was really comfy. I think I might invest in a Bentley ha, ha,. When I got to the garden party I was made known and taken through, after several pictures were taken by the press. I went through the Buckingham Palace gates and into the garden, I had some lemon juice and lined up for some butties and cake. The food was lovely and the cakes were lovely too. I enjoyed the iced coffee. I then lined up and waited to see the Queen and the Duke go past, it was a really hot day, even though I never got to say "Hallow" to the Queen or Duke, just being there and seeing them both walk past was amazing.

Two bands were playing throughout the day and that was awesome and so relaxing. I sat back in the sun catching a sun tan near the lake eating a lovely ice-cream. My day was amazing and I am so happy I was invited. David my chauffeur was such a nice guy and very friendly and he helped to make my day special too.

The time table for the day ran as follows:

At 3.00pm the royal gates opened, 3.30pm tea was served in the main tent, which were cucumber sandwiches and ham sandwiches along with some very fancy cakes and iced coffee, tea or juice.

Around 4.00pm the National Anthem was played to announce the arrival of Her Majesty the Queen and members of the Royal family.
The guest to the garden party formed two lanes to allow the Queen and members of the Royal family to move through the guest. While the Queen was taking tea in the Royal tent my mum and me went and sat by the lake eating an ice-cream. At about 5.50pm the Queen and members of the Royal family departed and the National Anthem was played. After everyone clapped the Royal family we went back to the lake, it was a lovely day and one that both my mum and I will remember for a very long time.

I am really grateful to the Manchester Evening News for arranging for me to travel by Bentley and to Bentley for agreeing to take me.

10th July 2010:
I had a great time in London at the fundraising awards and met some lovely people, I was not one of the big winners but it was an achievement getting to the final three.

I went to watch the x-factor auditions today with my mum and one of my friends, Emma, it was a very long day and my mum got to see Simon Cowell, we were only about ten rows back from the front so we were sat in a really good place. I am going again on Sunday as I managed to get some more tickets.

I have not got much else on this next two weeks as I have got a few hospital appointments that involve me having to spend the full day in hospital having test.

19th July 2010:
I went to the M.E.N arena to day to watch the Real Radio Big 15th Birthday Bash. When I got there I was greeted by my friends from the wish office. It's always great to see the girls. We went to McDonalds for some lunch, burgers and drinks. After this we were invited back stage and was greeted by a few who were performing on stage. I was really excited to meet Scouting for Girls, as I really do like them and think the lead singer is amazing (Roy)they were all down to earth and lovely. I loved every moment. I also loved meeting the x-factor runner ups and winners, to see how far they have come was great to see. The singers that I met had photos taken with me and signed my autograph book plus they signed a poster for me that I am going to have framed and then auction it. When we went through to the concert it was awsome I could see so much and I loved every moment, I was singing along to all the songs and on the boy bands I was dancing away and taking lots of pictures. You can see some pictures from the night on my picture link.

1st September- 17th September 2010:
I went on holiday to America with my family, we all had a really nice holiday. We went down to Miami for a couple of days and while we were there, there was a mini hurricane, which I thought was kind of cool. I was happy it was not disruptive and that it did not cause any damage, we just had difficulty standing up and was blowing us off our feet.

While we were in Florida we went to Magic Kingdom and Typhoon Lagoon. When I was in Typhoon Lagoon I went swimming with sharks and I sank as I choked on the water I was saved by a life guard. On the way home from our holiday and only two hours into the journey I took really poorly and was in a lot of pain, I was put on oxygen for the remaining six hours of the flight home, the flight crew kept coming up to me asking if I was ok, the pilot was going to divert the flight so that I could be taken off the flight, but I was ok to carry on to Manchester airport. I was taken into hospital the minute I landed. After spending the rest of the day in hospital I was allowed home.

4th October 2010:
I have enrolled on a cach course at the local college where I am applying to be a teaching assistant, it is a one year course and I now have a placement at my old high school, so hopefully I will pass the course and become a teaching assistant.

I am also busy getting ready for my next charity spook night, which is on the 6th November.


Craig Gazey (Graham Proctor in Corrie’)

12th November 2010:
My spookathon went really well and I would like to thank the following people for supporting the event. Craig Gazey (Graham from Corri'), my ambulance drivers, friends and family The Manchester Paranormal Team, Paul (09 Management), Will Hayes (Candidate 23) and the M.E.N readers for supporting my event.

I would also like to thank the person who very kindly sent me £200.00 for the charity. I would have liked to have dropped you a line but you did not include your name or contact details, but I am truly grateful to you. "Thank You".

I have just found out that I am the regional winner for the Spirit Award for all round commitment to volunteering and will no go forward to be named the overall winner next year.

I have also received an invitation to the Lord Mayor's Annual Reception on the 25th November, this is a very special event on the civic calendar and something that I am now looking forward too.

Work starts on my book on the 17th November and I am still keeping fingers crossed that it will on sale in time for Christmas.

Will Hays and Me

Shaun Rogerson and Me

16th December 2010:
Candidate23 are a 5-piece Indie Rock Band from the North West of England, their music has a unique and impressive sound. They are currently playing to audience's across the country. Their first single "One for You" was released on the 24th November 2010 and I was very honoured to be part of the launce party. I also did a collection for my charity, the collection raised £69.73p "Thank You" to all you donated. Will and his agent Paul Chadd also recently supported me at my spookathon. You may remember Shaun from when he was on the x-factor Shaun was also at the launce party.

My Spookathon raised £1593.50p with some more money still to come in. My book is almost ready to go on sale and I am just waiting on the date now.

I was at the wish office yesterday as I had to take all the money that I had raised and I was also doing some filming for the "Spirit Award", I have now got to attend an award ceremony in March when I will find out if I am the overall winner.

The Lord Mayor's annual reception on the 25th November that I was invited to was really good and I was given the opportunity to meet so many other people who help out in their community.

7th February 2011:
Great news, my book is now live, please go to my items for sale link for more information on how you can buy a copy of my book.

I have just found out that I am one of the National Finalist for the Spirit Award for all round commitment to volunteering, I am off to London in March with my mum. Click the following link to read more about it: I will let you know how it goes.

28th October 2011:
I have been very busy over the last few months, not only with hospital visits but with University, fundraising, doing radio interviews about my book, which is still selling well.

I won the Spirit award and was given my award by Leigh Francis, in London. Leigh was really funny and such a nice guy. I met so many other young adults who had done amazing things for their community and everyone in the room was a winner to me.

I recovered well from my last surgery but after my next charity event in December I have got to go back in hospital for more surgery, Mr. Christopher Duff is going to do the surgery, he is a really nice guy and very understanding.

I went on holiday to Tenerife for my 21st Birthday and had a great time. I have also been away to the USA with my family for two weeks. I am now busy working on my charity spook night. I am staying in Hyde Town Hall again to raise money for the when you wish upon a star charity. If its anything like last time we are all in for a great night. We had so much ghostly activity last time. The event also raised over £1000.00 for my charity so I am hoping to raise more than that this time.

I was also named in the finals for the Red Cross award at the beginning of this month and I had to go to London, I was aloud to take two guest along with me so a couple of my friends came with me, my mum and dad could not come as they were at an NF meeting in Manchester. I was meant to be doing a speech at the NF meeting but due to the awards I could not attend the meeting, but I have promised that I will do my speech at the next meeting that they have. I did not win the Red Cross award but again it was a nice opportunity to meet other young people who do nice things for others.

17th November 2011:
I have been asked to explain what winning the V Inspired National Award last year meant to me, so here goes: "Being a winner at the V Inspired National Awards last year was a really big honour. and going to the awards in London was an absolutely amazing experience. There's such a negative attitude towards young people, so it was brilliant to be part of an event that shows all the good things we have to offer. If you know a really inspiring young volunteer please nominate them now. I'd love to see another volunteer from Manchester get to the finals!" The V Inspired National Awards are now open. Do you know a young volunteer doing great things in their community? Someone who is always helping others or working tirelessly to change things for the better? If you do - nominate them now. Apply here: and good luck.

My book is still selling well both in the UK and USA. My book sold out in WHSmiths in the Trafford Centre in Manchester and they ordered more copies, which was great news as all the royalties are going towards my fund raising target and having a second book published.

8th December 2011:
I have had a busy month at University and will be glad to take a rest over Christmas. I have also been busy getting ready for my charity spook night, which I had last Saturday, over 30 people took part and everyone had a great night, a lot of people asked if I could arrange to have a ghost night in a castle so I am going to look at arranging that next year.

I have got some really exciting news to tell you all in the New Year, but I have got to bite my tongue till then.

22nd January 2012:
On Saturday the 31st December 2011, it was announced publicly in the Queens New Year Honours list that I am to receive the M.B.E.
Being chosen to receive an M.B.E for the work that means so much to me is very exciting and I feel very honoured.

The vast majority of people recognised in the New Years Honours list include those supporting the Big Society by making a real difference to their local community through volunteering, fund-raising, social action and philanthropy.

I was one of three people receiving an Honour on the New Years Honours list that was invited down to London to meet with the press. The two other people being, Dr M Philippou, who was also to receive an M.B.E who is focused on helping young people move away from gang related crime by giving them an incentive to be 'STARS' (Social, Trustworthy and Responsible) and Christopher Preddie, who receives an O.B.E . Christopher had devoted his life to youth work and trying reduce crime. He uses his own personal experience to talk to youth groups and prisoners about crime and the huge impact that it can have on your life.

My dad took us down the night before as we had to meet with the press really early. Can you believe it when I say we were able to drive into Downing St', loads of people were stud outside the gates watching as we drove in and parked up while the police searched our car to make sure we were who we said we were. It was all very exciting, we were then showed where to park our car at the back of 10 Downing St'. We were showed in to this large room (Chambers) and given drinks and congratulated by members of staff in the room.

My mum and dad sat behind me and I was told to sit in the middle at the head of this large table with the other two people who had also been invited told to sit at the side of me. The door opened and about 30 people from the press came in and sat round the table, they were each given notes as to why we had been given the honours and we were told to say a little bit about the work that we do and at the end they were allowed to ask questions. I was asked to go first, I spoke for about 10 minutes just telling them about the charity and why I felt it was important to me, then it was Dr. M Philippou's turn, Dr. Philippou was one old type school teachers and took us back to when she was a young girl at school, after 35 minutes of her talking they had to ask her to finish, but she still had a lot more to say and carried on for a further 15 minutes, in the end they had to explain that they were running out of time and that Christopher still needed to say why he had received an honour. At this point she did pass over to Christopher who then spoke for about 10 minutes.

The press asked if I was the youngest person to receive the M.B.E and they were told that I was the youngest person this year. After 15 minutes of answering questions we were each interviewed separately. When I got home I loads of TV and radio interviews, I was on the ITV main news, local BBC North West News, Granada News, ITV Main News and a few radio interviews as well as being in the press, I even made front page news of the Manchester Evening News.

I hope by receiving the M.B.E it will help my charity work as the children that I help really deserve their wishes to be granted, they each spend a lot of time in hospital having painful treatment. I have been one of them children to spend months in hospital and knowing my wish was going to be granted really helped me. I still attend hospital frequently, I still have to have painful treatment and the older I get it does not get any easer for me, but knowing I can help other poorly children helps me forget about my hospital treatment.

I have not got the date for when I am to receive my M.B.E yet but have been told I will be given six weeks notice. I am really excited about but I really don’t know what I am going to wear.

I have received so many cards of Congratulations from people who read my story in the Manchester Evening News along with some kind donations and I would like to thank you all.

Click on this link to hear One of my radio Interviews and One of the ITV News Clips

My book is still selling well and I hope to have it on kindle soon, I am just having problems working out how to do it, my publisher would do it for me but they charge and I am selling the book to raise more money for charity so don't really want to go giving it the publisher more money. I am also hoping to start some more work on my second book soon as lots of people have asked if I will do a follow up to what they have read so far.

30th April 2012:
I have had a very busy few months, I now have my M.B.E, which you can read all about in my diary page. I am also doing the Olympic torch on the 22nd June in Blackpool, so if you are around in Blackpool that day give me a wave.

My book is now on Kindle, for more information on how you can buy your copy on kindle please go to my items for sale link ware you will find all the information needed.

I was also nominated to go on the Happy list for the Sunday Independent and was named on the happy list. I still don't know who nominated me, but thank you whoever you were.

My M.B.E charity celebration night went really well and I raised £383.00 on the raffle.

I am having a big Black and White Ball in October to raise money for when you wish upon a star and I have already sold all the tickets, which is good news as we are only in April. I have just got work on getting items to raffle and auction now.

3rd November 2012:
My charity Black and White Ball was a huge success
I will update with some more news very soon. I had over 340 guest and people were not shy at putting their hands in their pocket and the night raised a jaw dropping 60K, which was one of the best charity events to date. Will Mellor. Nikki Sanderson and some of the Holly Oaks cast came along to support the event.

My next big charity night is in December when I will be staying in an haunted place over night, if you would like to sponsor me for this event then please go to my just giving link where you can make a donation in a safe way, "Thank You".

29th May 2013:
I have had a busy few months with one thing and another, but I thought you might like to hear about my most recent achievement.

I was invited to the Inspiring women awards on the 17th May 2013. The award ceremony took place at the Midland Hotel in Manchester, it was a lunch time event and I went along with my mum we had to be there for 12.15pm.

Interview that I had two weeks before for the Inspiring Young Woman Awards.

I won, Oh my God... I won most Inspiring Young Woman of the year 2013.

Right I'll calm down and tell you all about it.
Two weeks before the awards I had a visit from Jacqueline Hughes-Lundy who is the founder of the awards and Tom (Tom was doing the filming). I was told they were filming all three young women who were finalist, but I now know that they didn't and it was just me! I had an interview and photos taken which I thought the other finalist had done too, but it was just me. It all kind of seems obvious now, but I honestly didn't have a clue that I was the winner, so it made the surprise all the more amazing when my name was called, they showed a footage of my interview and I was given a standing ovations. They played Peter Andre singing while I was going up to collect my award (I just love him he's such a caring guy). I really was not expecting to win. I was so pleased to have been told I made the final three. I was over the moon when I won. I was presented with a cheque for £1000,00 to help me with any projects that I want to do, a lovely bunch of flowers and a glass trophy. I was interviewed for the M.E.N, which went in the paper the following day and interviewed for Manchester Radio. You can see the press cuttings on my press link

I have a busy weekend doing two charity events, why not come along and say "Hi" it would be great to see you.

6th June 2013:
I have had a busy week in work this week, but as normal loving every moment of it, I have been attempting to write poems and stories for the CBeebies radio channel. The sun has been shining bright and its been a glorious few days.

A few work colleagues in another department from myself, asked me about going carting with them (racing at 70mph in  a go cart ) ... as we all know, I love adrenalin and things that are fast pace, so I jumped at the chance. some could say I was in my element... 13 lads 1 girl, lol. well I was asked where am I expected to end and I said providing I am not last I don't care, and happily enough I came 12th. "GET IN". I did the trail course several time and I did ok, I did not spin off track or crash once, but once we all got competing I kept spinning off. I think the worse line I  had was off the steward ' do you want me to move the pedals closer so you can reach'  OUCH! that hurt.

I have a busy month now with different things taking place, for instance Candidate 23 the band which are part of 09 management that support me at my party's are performing in Manchester on Saturday, so if I am better I shall be attending, the following week, work are doing a boat party where we all sing on karaoke down the Quays in Salford and at the weekend we are looking at going to Blackpool together to go up the tower and onto the pleasure beach. Then its my gran's birthday on the Sunday.

August 2014

I have been busy in work lately, I have got a contract till March next year which is ace and very hard to achieve. I have been socialising a lot with my colleagues and recently I organised a boat party which was amazing. it went around the cannel near work, we had a DJ and karaoke and it was great to see every let there hair down and get in the sprit of things. I am going on holiday soon with my parents and I excited for this. As you all know I love Florida so much. Me and my gran are going on  day trip to the sealife centre as well soon which is not to far from my mums. I am looking forward to this.

September 2014

I went to Florida for 2 weeks with my family, and as normal I had a fantastic time. I was a bit upset that I didn't see Stitch, as we all know he is my fav'. However I did buy a lot of Stitch items whilst I was over. It was great to see my family and spend some quality time together, as we do not get much chance to do this, these days as I am working.

October 2014

I went to the Belfast Scoliosis conference, and had a fantastic time whilst I was here, as well as meeting SAUK, I also met, Scoliosis Ireland. It was amazing to meet other people with Scoliosis that have had the operation or are going to have the operation. The event was very useful and had a lot interesting topics that where being covered. to learn more about what SAUK do, you can visit there website on

Will update when I have some more news for you.

NF is a life-long condition, and you must learn to live your life, and not let the disorder rule your life. The more you understand the more you will be in control, so be sure to ask questions of your medical professionals. Find someone you trust, and share your feelings, fears and frustrations. The challenges posed by having NF are hard, but they can be overcome and you are not alone. They say a problem shared is a problem halved. You can always email my mum or me and we will both do what we can to help.

I hope one day we can say "We have found a cure for NF, Neurofibromatosis is now history".

If I can offer help and support to anyone, please contact me. We are all here to help each other. That is a gift we can give each other. Thank you for reading my story.

Thank you to all my doctors, nurses, family and friends for getting me through some of my most difficult times.

Take care


Kirsty xxxx

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