FOR six-year-old Jack Price something as simple as holding a pen or even kicking a football around is a challenge.

The youngster is living with the muscle-wasting disease Duchenne muscular dystrophy leading him to struggle with his sense of balance.

He was diagnosed with the condition following a heel prick test at the tender age of eight- weeks-old.

Since then his family has faced an uphill battle in trying to get the physiotherapy he so desperately needs.

Jack's 40-year-old dad Shaun Price, of Heol Cae Copyn, Loughor, said it was only two years ago that Jack was first offered the support of a personal assistant — Denise Crocker — who ensures he does the stretching exercises needed to help aid his condition.

Mr Price said he believed it was vital a centre of excellence was set up in Wales to help others as well as his son to cope with their condition in the future.

Jack is currently seen by specialists at the London-based children's hospital Great Ormond Street on an annual basis.

The family fought for him to be referred there after being unable to track down a doctor locally when the youngster was encountering stomach problems from the steroids he was taking.

Mr Price said although Wales was ahead of both England and Scotland in terms of diagnosing the condition by offering the test, it was lacking the proper number of professional physiotherapists.

He said: "I am devastated, more than surprised, at the lack of services.

"We are quite happy with Jack's progress at the moment, as Miss Crocker seems to be doing a good job.

"Our concern is that someone who is not a physio is doing good with him — how much better would Jack be with a professional? I would like to think he would be doing even better.

"He's not only got trouble with running but has problems holding a pen or pencil."

"We are fighting for a centre of excellence anywhere in Wales," Mr Price added.

"I would like to see it in Swansea as I live here, but it would be easier if it was in Wales rather than having to travel to London."

He said he had used the opportunity of meeting with a Welsh Cross Party Group for Muscular Dystrophy to flag up the issue. Mr Price said his son, who is on steroids to help strengthen him and aid him with his mobility, was only reviewed on a six monthly basis but was not given physiotherapy at those meetings.

Mr Price said both his and his 41-year-old wife Bethan's world was completely turned upside down when they were originally told Jack had Duchenne.

"It was as if a bomb had dropped," Mr Price added. "We were told that my son had a life- long injury and we were told to go home and enjoy with your son — there was no-one to phone or to speak to."

An Assembly spokesman previously added: "Health Minister Edwina Hart is well aware of the difficult issues around health services for people with neuromuscular conditions and has taken action to improve the care and support to individuals living with these conditions and their families.

"We have been working with the Muscular Dystrophy Campaign on this. We would expect patients are provided with the appropriate care and support based on clinical need." elizabeth.perkins@swwmedia.co.uk