'My son, 12, can't have free life-changing drug because of where we live'
Having to watch her son slowly fade away is heartbreaking in itself but knowing he can't have a free drug because of where he lives, is nothing less than mental torture.
That's the everyday reality for Colleen who is mum to Alfie Pentony, 12, from Newry, County Down, who was diagnosed with Duchenne Muscular Dystrophy (DMD) when he was just four years old.
Her fun-loving, football -mad son is getting weaker every day - but a new drug, Givinostat, could slow down his incurable condition and help him walk for another three years.
But although the drug is free in other parts of the UK, the Belfast Trust has said it does 'not have the capacity' to offer it in Northern Ireland.
'We're heartbroken and devastated,' Colleen, 43, tells The Mirror. 'It's unjust, shameful and feels like mental torture knowing there's a drug that could help him but he can't have it because of where we live.
"Alfie is a typical little boy who wants to grow up and play for Newcastle United like Lewis Miley. We know this is never going to happen but if he got this drug, it would at least help prolong his ability to walk for maybe another three years and continue to kick a ball for longer.'
Muscular Dystrophy is an inherited genetic condition that gradually causes the muscles to weaken so sufferers eventually lose the ability to walk - with most only living to their 20s or 30s.
While DMD is one of the most common and severe forms - this new drug could slow it down giving patients an extra three years without being restricted to a wheelchair.
'We don't know how long Alfie has left on his feet, most boys are wheelchair bound at the age of 12, so he is beating the odds so far,' Colleen adds. 'His muscles are breaking down every day - but time is muscle and in a few months it could be too late for him.
"Every day that he doesn't have access to the drug, he is getting weaker than the boys who have access to the drug which is unjust and cruel. The Trust has put a price tag on my son's life and I'm not having it, I don't know how they can sleep at night.
'This drug is something that could dramatically change the course of our son's disease and to be told we can't have it is mental torture. I feel let down by the service that is meant to protect these boys, the fact that we are the only part of the UK that won't provide this drug is shameful. It could massively prolong Alfie's life and his quality of life.'
Alfie is also pleading for the drug - not just for himself - but for the 10 other boys in Northern Ireland who it could also help. The anti-inflammatory drug, Givinostat, has been approved for use in the UK by the medicines regulator and is available on the NHS for people who meet strict criteria. But individual trusts must apply to take part in the Early Access Programme (EAP).
The Belfast Trust said currently it 'is not in a position to proceed' to offer the free drug. 'Its implementation will need to be managed within defined and agreed protocols and additional staffing resources will also be required to ensure the treatment can be provided safely," a spokesperson added. "We recognise this will be very disappointing for families and the Belfast Trust sincerely apologises to them.'
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