ex Wigan rugby league player Andy, also suffers from causes muscles to weaken and waste over time, leading to disability and significantly shortened life expectancy.
Katy, 30, from Waterfield Village, off Lowfield Lane, said: "Clark is only six so the condition hasn't had a big affect on him yet, although he struggles with running and climbing stairs.
Katy Doyle, whose son Clark has Duchenne muscular dystrophy, gave evidence to a document that was Puma Roma White
They warn the way drugs are funded and assessed could lead to hundreds of children with life shortening conditions being denied rapid access to new therapies.
The disease which four old Jack Johnson, son of Puma Ferrari
how the newly shaped NHS will deliver expensive rare disease medicines as more devastating genetic conditions become treatable in the future.
handed to the health minster Norman Lamb this week.
THE mother of a six year old boy with a rare muscle wasting condition has raised fears in a Parliamentary report that the NHS may refuse to fund breakthrough treatments.
Mum of Duchenne sufferer calls for special NHS budget to fund rare disease treatments From St Helens Star
The report is the result of a six month parliamentary inquiry into Puma Shoes Women 2017
A special budget for treating rare diseases was merged into the overall NHS budget.
She tells how her family face a "race against the clock" for rare disease therapies to be licensed and fears Shoes Puma For Girls local NHS boards may not earmark cash to fund them.
However, MPs fear that convoluted drug assessment processes, funding issues and lack of specialist care could delay, or even prevent entirely, new therapies from reaching children and young people, such as Clark.
Clark, whose family has raised thousands for charity after his story featured in the Star this year, was diagnosed with Duchenne muscular dystrophy two years ago.
It is believed potential genetic treatments for Duchenne, known as exon skipping, are on the horizon. However, they could cost as much as 100,000 per patient and the MPs are calling for a ring fenced fund to pay for drugs for rare conditions.
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