Years of pain - but Neurofibromatosis sufferer Kirsty Ashton just wants to help our kids

Years of pain - but Neurofibromatosis sufferer Kirsty Ashton just wants to help our kids

By Mandy Appleyard

Kirsty Ashton has had years of surgery to battle an incurable disease. But instead of feeling sorry for herself, she raised £75,000 to make other children’s wishes come true.

Like any 18-year-old, Kirsty Ashton is full of dreams for the future. She’s hoping to go to university soon, then to become an actress, a model or a TV presenter.
But Kirsty has already seen more of life and confronted more of its challenges than most of us ever will.

Kirsty needs crutches to walk far. She has been in hospital countless times, undergoing surgery every year since she was 14.

A lot of the time she’s in severe pain and her body bears the scars from operation after operation to remove tumours from her neck, legs, knees, ankles and feet.
She takes a cocktail of drugs every day, has physiotherapy every week and has some learning difficulties.

But Kirsty shows not a trace of self-pity. In fact she finds time to raise thousands of pounds so that other children with serious illnesses, often terminal, can visit special places like Lapland and Center Parcs.

She says: “I just want to do something for other people. Helping others is what makes me happy.”

Kirsty, who lives with her family in Wythenshawe, Manchester, has every reason to be angry at life, but she isn’t.

She was 11 weeks old when she was diagnosed with neurofibromatosis (NF) – a genetic disorder which can cause multiple tumours to grow on nerve endings on or inside the body.

It affects the nervous system and can even lead to an earlier death.
Her mum Julie, 49, explains: “I have NF but less severely than Kirsty. I knew there was a 50-50 chance of passing it on so when my first child Christopher was born, it was a relief that he was clear.

“But as soon as Kirsty was born I noticed brown patches on her skin, which is a symptom, and a small tumour on her back.”

Despite the diagnosis, life went on as normal until Kirsty was eight, when a check-up revealed curvature in her spine and she was diagnosed with scoliosis. Tumours growing on her spine were pushing it to one side.

It was bad news. But Kirsty and her family didn’t give up.

“In fact my brother Chris knew I’d always wanted to go to Lapland,” Kirsty says. “He said I had been so brave that he wrote to When You Wish Upon A Star – a charity that makes dreams come true for children with life-threatening illnesses – and told them about me.

“I had a great day and I met a girl there that I really liked but she passed away not long after we got back. That’s when I realised that without the charity she would never have got to see Lapland in her short life.”

Julie adds: “The trip really moved Kirsty. She went with her dad John and saw children with cancer and terrible conditions.”

Kirsty decided to start helping local charities, selling bric-a-brac and giving the money to charity.

Meanwhile she still had to deal with her own disease.
When she was nine she started wearing a Boston Brace 23 hours a day to help support her back and ease the pain.

A hard “jacket” reaching from the top of the chest to the bottom of the hips, it was hot and uncomfortable. But Kirsty amazed doctors with how quickly she got used to it, and she wore it permanently for the next six years.

“Kirsty had to have major surgery at 14, where the surgeon put titanium rods into her spine to straighten it,” Julie says.

“Removing the tumours was too risky because of the danger of paralysis so the rods were seen as the next best thing. But even the surgery could have paralysed her.”
She spent two weeks flat on her back and three months in hospital – yet still she stuck to her mission to make life easier for other sick children.

In the past three years she has raised an incredible £73,740 for When You Wish Upon A Star. Kirsty explains: “I organised a charity ball which raised £24,801 and a Valentine’s ball which raised £23,000. I did a sponsored spell – because I’m dyslexic and thought it would be a challenge – in my lunch hour and raised £170.”
She’s also sold home-made Christmas cards, organised a rugby tournament and sold more than 800 pin badges.

A total of 94 children have been able to travel to Lapland in the last three years as a result of Kirsty’s fund-raising.

But Kirsty, who has written a book about her struggle with NF and is now looking for a publisher, has no intention of stopping there.

“I want to raise a further £75,000 in the next year to send 30 to 40 families to Center Parcs with children who are too poorly to fly.”

Maria Moseley, the charity’s events manager, says: “Kirsty is an amazing young lady. She is our own fairy godmother – and she’s a fantastic role model to other young people. She helps make magical memories for some courageous children.”
And Kirsty’s own battle goes on. She has endured serious surgery every year for the last four years.

Each time she’s had five tumours removed and has been left with three particularly severe scars on her back.

Her mum says: “Neurofibromatosis can be very cruel and we don’t know whether her life expectancy will be impaired.

“But Kirsty’s a very bright and happy child in spite of all the
challenges she faces.

“She never complains and is always thinking of other poorly children.
“She’s one in a million – I love her more than words can say.”

Kirsty’s wish... to be a model
We treated Kirsty to a day living her dream – to be a model.
Courtesy of the Mirror, the young campaigner was whisked to our photographic studios in London, where a top stylist was waiting to meet her.
She was given a luxury makeover before strutting her stuff in front of the camera – producing a portfolio of shots.

She says: “I loved every minute of the day, it was brilliant from start to finish.
“Having my make-up done, and trying on all of the clothes made me feel like a real model.

“The photos are great and I’m just so pleased I had a chance to do it.”
In recognition of her hard work and dedication, Kirsty was named
a “UK Huggable Hero” in 2008 by Build-A-Bear Workshop. Kirsty has
her own website at www.kirstysstory.co.uk and When You Wish
Upon a Star can be reached at www.whenyouwishuponastar.org.uk
or by calling 0161 477 7277.