Ironman effort for disease fight (From Wilts and Gloucestershire Standard)

Ironman effort for disease fight

8:00am Monday 20th August 2012 in News By Laura Shack

A FAIRFORD barman has taken on an Ironman triathlon to raise awareness for a rare terminal disease suffered by a youngster in his hometown.

Craig Dudley, 22, had always wanted to take-on the strenuous swimming, cycling and marathon challenge.

And when he met teenager Ollie Robinson he was determined to complete it for him.

Ollie, from Fairford, is only 13 but has already reached his expected lifespan.

The former Meysey Hampton Primary School pupil has a degenerative disease called Mucopolysaccharidoses (MPS), which varies depending on its form but causes learning difficulties, speech and hearing loss and a dramatically shortened life span.

Craig, who works at The Bull in Fairford, said: "Ollie is doing fantastically well because he should be in a wheelchair by now, but he’s cycling and having fun.

"I really wanted to raise awareness for the disease – not enough is known about it."

Although Ollie was not diagnosed with a rare form of MPS called Sanfilippo until he was seven-years-old, his mum Karen said she always knew there was something wrong.

"He was quite a physically able child when he was young but that started to slow down," she said.

She said he also displayed very challenging behaviour which, before moving to Meysey Hampton Primary School, had been labelled as "naughty".

With the help of teachers at Meysey Hampton Primary School Karen fought for answers.

Now she has them, she said it is a waiting game because Ollie's symptoms are set to get progressively worse.

"A lot of the children who have Sanfilippo are dead by 13," Karen said. "It’s a horrible, horrible disease."

Karen said any money raised for "Project Sanfilippo" at the MPS Society, would help to find a treatment of the genetic disease, which she fears her other 10-year-old son Sam may be a carrier of.

"It will probably be too late for Ollie," she said. "But hopefully one day there will be a cure for it."

Former Farmor’s School student Craig completed the 2.4 mile swim, 112 mile cycle and marathon event at Bolton last week in 12 hours and 55 minutes, raising around £800 for charity.

To donate visit justgiving.com/Craig-Dudley and for more information on Project Sanfilippo visit mpssociety.org