Pride of Manchester: Wythenshawe woman awarded MBE after courageous battle against hereditary disease

By Todd Fitzgerald

It’s January 1999 in Wythenshawe, South Manchester. Nine-year-old Kirsty Ashton stands proudly behind a trestle table filled with the Christmas presents she received only a few weeks ago.

She doesn’t care how much money she gets for them, she just wants to raise something for the charity which made her dream come true, in tribute to the friend she tragically lost.

Now 12 years later, she swapped her front garden for Buckingham Palace and knelt before the Queen to receive an MBE.

Todd Fitzgerald meets the incredible young woman dubbed the ‘Pride of Manchester’ all the while battling an incurable disease.

Kirsty Ashton was sent to Lapland after her brother wrote to the When You Wish Upon A Star Foundation.

She met a young girl with leukaemia, Chloe, and spent the trip by the side of her new companion.

Inseparable, they wrote their address in each other’s colouring books and promised to keep in touch.

Kirsty had spent her young life battling Neurofibromatosis (NF), a congenital disease manifesting as tumours within the body, and found out she also had scoliosis.

This trip was respite – a mere week to forget the constant agony she suffered in the company of the girl she felt was her soul mate.

A week after returning home, she was told Chloe had died. Kirsty vowed there and then to give something back and took to her front garden to sell her Christmas presents.

“I was devastated, we were already so close. We had shared everything, and told each other about the pain we were going through,” she said.

“But I thought that if they hadn’t have raised the money and sent us to Lapland, I’d never have met her.

“So I sold all my Christmas presents to raise money. I didn’t care what I got I just wanted to raise money.”

Just over a decade on, Kirsty has raised more than £100,000 and plans to double that this year.

A string of awards have overwhelmed her, but none more so than her most recent an MBE from Her Majesty The Queen.

On the eve of her 22nd birthday, she told of her determination to be a ‘friend to anyone who needs support,’ and insisted she’s just a normal twenty-something year-old looking for a boyfriend and having a good time.

“I don’t see myself as special, I’m just like anybody else,” said the all too modest Pride of Manchester winner.

Kirsty said her adulthood dream is to become a foster carer, which personifies her most commendable of traits – her generosity.

Time and again, she offers her support to anyone who needs it, despite needing so much herself.

“If parents of children diagnosed with NF, or scoliosis, need me, I’d be there for them. If they need help, they know where I am. I’d do anything.”

Kirsty was diagnosed with NF when she was 11-weeks-old, and with scoliosis when she was nine.

All her life she has faced regular hospital visits and has been under the knife nearly 50 times.

The condition means that the inside of her body is filled with tumours which grow on nerve endings.

They are difficult to remove and doctors run the risk of permanent damage every time they operate.

With some running along her spine, her scoliosis is made all the more worse by the disease. But even that does not deter Kirsty.

“I’ve had about 49 operations. That’s how many scars I’ve got anyway. It doesn’t bother me any more – I just go in and have a cheeky look for any fit doctors!”

It’s hard to believe that this young woman has had such a difficult life. Not because her condition is overstated or in remission, but because she hides it so incredibly well.

Not once does she complain, and is much more keen to talk about others than herself.

“I’m not angry or upset about it. It could always be worse, I just deal with it as it comes and get on with life,” says the student and former Trafford Young Citizen of the Year.

“There’s always someone out there in a worse off situation, you just have to be positive.”

And positive she is – in absolute bounds.

Kirsty’s scoliosis meant she had to have two titanium rods put into her spine in an attempt to straighten it. It also meant wearing a Boston brace, a sturdy, corset-like brace which supports the spinal column, for five years.

Once she reached puberty her condition worsened and it culminated in an operation which doctors halted half-way through after fearing they’d paralysed her.

“There were complications. They didn’t realise how bad the NF was on my spine. They had no idea there were that many tumours, they hadn’t shown up in the scans.

“They thought I’d be paralysed, so they stopped and woke me up and asked me to move, which I couldn’t for a while.”

After sending Kirsty home, doctors, who had never seen a case as bad, had to rethink the operation.

They completed it two weeks later using an alternative, but risky technique.

Sadly, NF has no cure, and as a hereditary condition, there’s a 50/50 chance of her children inheriting it.

But Kirsty insists she still wants to be a mum, and draws inspiration from her own mother, Julie, 54, who also has the condition.

Anyway she’s too busy raising money for others to feel sorry for herself, and that’s on top of writing a book about her life with the condition, ‘Kirsty’s Story’, running a website dedicated to advice on NF and studying media at university.

She said: “The website was my idea, and we realised after a while that we were getting quite a lot of hits.”

“I hoped that if I kept an online diary, people in a similar situation could see what I was going through and I could offer them real life advice.”

It’s clear that Kirsty aims to ease the situation for those in her position, offering her wisdom after years of suffering with the condition.

She added: “When I was young, I hated going to the hospital because of all the jargon they used – this was mainly a way to tackle that. I knew that if I was having trouble, others would be too.

“I try to make it sort of an ‘idiot’s guide to doctor terms’.”

Kirsty’s amateur fundraising soon gained momentum and with the input and funds from business owner, Keith Oldfield, she hosted her dream ball, attended by her favourite celebrities which raised an astonishing £25,000.

She said: “I told him I was determined to do it. I had a call from him one day saying he wanted to give me the money to actually go ahead. I couldn’t believe it.

“We had Colin Bell, Bernard Manning, people from X Factor and Corrie actors there.”

Kirsty’s tongue-in-cheek attitude saw her raise £4,000 with just two auction items – her own signed photo.

She added: “I thought I’d be a bit cheeky and sign a picture of myself, being a bit big-headed. It fetched £2,000.

“Colin Bell said if I signed another, he’d give £2,100 for it. It was crazy my mug shot raising that much!”

Kirsty’s tireless efforts have earned her an astonishing list of accolades including The Princess Diana Gold Award, Trafford Young Citizen of the Year, Manchester Hero, Young Business Enterprise of the Year, Child of Achievement and The Pride of Manchester, to name a few.

But her proudest moment came when she found herself opening an MBE nomination letter posted to her Wythenshawe home.

She has no idea who nominated her, and with so many applauding her efforts she probably never will.

She said: “It could be someone I’ve met, or just someone who’s seen me in the paper. Whoever it is – thank you.”

Her day at Buckingham Palace, Kirsty maintains, was one of the best moments of her life.

Despite the award, it’s still the simple things in life which make her the most happy, however.

She said: “I went to Buckingham Palace with my family. It was nice to spend time with them, I don’t see them as much as I’d like. That was as just good as meeting the Queen.”

After recent knee problems, Kirsty’s main concern was not how to address the Queen, but not falling over in front of her.

She added: “I was so excited, but was nervous in case my knee went in front of the Queen – my mates said they were waiting to see me on YouTube.”

Kirsty insists her MBE will not change her and is determined not to use it as a ticket in life.

She said: “I keep quiet about it unless someone asks me – it’s not my first topic of conversation. I don’t tell lads if I’m on a date. It’s not my chat-up line.

“I don’t want to exploit my award, I don’t want it to change me, I just want to carry on being me.”

Her love life is not something Kirsty shies away from in conversation and it’s refreshing to see someone in her position living her life as so freely.

She said: “When my knees got bad I had to go and have physio and I started off thinking, ‘I can’t do this’ – I had so much going on.

“My physio left, and I got this new guy, who was really cute and good looking. I always wanted to go to the sessions then, I loved the chance to flirt away!

“Out of a bad situation, I tried to make the best of it and have fun.”

Kirsty was even determined to enjoy a family Christmas this year, despite leaving hospital early on Christmas Eve.

She explained:“I was supposed to be in Christmas Day, but I told them I felt okay after the operation and wasn’t sick in the night – which I was.

“I felt ill, I was sick the minute I got out and my Dad told me I had to go back, but I was determined not to.”

So, as she continues her fundraising as an MBE, Kirsty stands as a shining example of achievement in the face of adversity.

Who knows, if she continues in the same vein, she may one day kneel before the Queen to become Dame Kirsty Ashton.

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