AT 43, Deborah Axtell thought she would have stopped having growing pains.

But she is one of the oldest people in the country with the rare genetic disorder Beckwith-Wiedemann Syndrome (BWS), first discovered in the 1960s.

It means parts of her body are constantly growing at different rates, putting her at risk of cancer, diabetes and epilepsy.

She said: “I’m 5ft 9ins and still growing – it’s a real pain to have to buy new clothes and shoes all the time, and I’m still having other medical problems.

“My feet grow at different rates, so I’m currently a six in one and a seven in the other. I have to get specially made shoes so that I can walk evenly – my right leg is 25mm longer than my left.

“I’ve been unable to work at all because of my condition and I struggle to get about.”

Now Mrs Axtell, who lives with her husband Stephen in Blackbird Leys, has dyed her long hair bright purple to raise awareness of the disorder and to raise money for her charity, the BWS Support Network UK and Europe.

She said: “The doctor delivering me had just read an article about the syndrome on that day so noticed my symptoms.

“My parents were told to make the most of the time they had with me and to prepare for the worst.”

Very few children with BWS survived to adulthood back then -– only one in five do now – but Mrs Axtell beat the odds.

But instead of her problems subsiding, she still struggles.

She added: “It’s classified as a condition that only children have, and previously there was a very high mortality rate so people just didn’t think there were any adults that have it.

“Once people reach puberty they get dropped by the medical profession. People have to keep fighting to stay in the loop.”

In 2010, Mrs Axtell set up a support page on Facebook for fellow sufferers, with more than 170 members, which became the BWS Support Network UK and Europe.

She said: “I set up the charity with my friend Kirsty Carty – her son Joshua has the condition.

“We set up a group for people with BWS to talk and it’s just gone wild, loads of people come to us from all over the world for support.

“We’re desperately trying to get awareness out there, people don’t know what it is.”

The charity also aims to help the families of BWS patients in other ways.

Mrs Axtell said: “We help parents fund new shoes – it’s so expensive when you need special shoes and your kid is growing out of them every few weeks.

“People can’t afford that.”

She has to spend £70 on every pair of shoes as she has to get them specially modified by staff at the Nuffield Orthopaedic Centre, so she is balanced when walking.

By colouring her hair, Mrs Axtell is trying to raise £400 in sponsorship for the cause, and has so far raised just over £230.

She said: “I’ve got to do something, and I thought the best thing about me to change was my hair – I’ve never done anything with it before.”

 

 

  • Do you want alerts delivered straight to your phone via our WhatsApp service? Text NEWS or SPORT or NEWS AND SPORT, depending on which services you want, and your full name to 07767 417704. Save our number into your phone’s contacts as Oxford Mail WhatsApp and ensure you have WhatsApp installed.