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new hope Belfast boy with rare Duchenne disorder given glimmer of hope with new medical trials in US

Football mad youngster's family have spoken of their joy at getting funding for groundbreaking treatment

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Niall McCahey pictured at his West Belfast home following treatment in America. Pic Pacemaker

Niall McCahey pictured at his West Belfast home following treatment in America. Pic Pacemaker

Niall McCahey pictured with dad Mark McCahey who spoke to the Sunday World following treatment in America. Pic Pacemaker

Niall McCahey pictured with dad Mark McCahey who spoke to the Sunday World following treatment in America. Pic Pacemaker

Football mad Niall getting the better of his dad in a tackle. Pic Pacemaker

Football mad Niall getting the better of his dad in a tackle. Pic Pacemaker

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Niall McCahey pictured at his West Belfast home following treatment in America. Pic Pacemaker

Niall McCahey's dreams of becoming a footballer can never come true.

It's every boy's dream to pull on the shirt of his favourite team as a player and some dreams come true, but for Niall it's an impossibility.

The football-mad youngster from West Belfast suffers from Duchenne Muscular Dystrophy (DMD), an ­incurable genetic disorder and ­muscle-wasting disease that no child has ever survived.

Just last week the Duchenne community lost two of their "warriors" to the cruel disease that eventually leaves them unable to walk, their young lives then cut short by organ failure.

Yet their is a glimmer of hope for the popular Our Lady's schoolboy who always has a smile on his face.

Niall and his parents, Mark and Louise, have just returned from America after taking part in a trial that, if successful, will give their little boy more precious time and a better quality of life.

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Niall McCahey pictured with dad Mark McCahey who spoke to the Sunday World following treatment in America. Pic Pacemaker

Niall McCahey pictured with dad Mark McCahey who spoke to the Sunday World following treatment in America. Pic Pacemaker

Niall McCahey pictured with dad Mark McCahey who spoke to the Sunday World following treatment in America. Pic Pacemaker

It was made possible by the kindness and generosity of a community that rallied around the young family to raise thousands for the trial.

"We are just back from America for the first time where Niall had infusions, we have signed a non-disclosure document so this is all I can say at this stage," Mark McCahey told Sunday World.

"It involved injections into his arm and thighs and we could see a difference about an hour and a half later which gave us hope.

"Niall walks on his tip-toes, he is waiting for tendon-release surgery but after the infusions he was walking flat on his right leg, and also on the left he wasn't on his tip-toes as much. It was something positive though it didn't last for long."

Mark and Louise know the trial will never cure their son, something they try not to think about, their focus is giving him the best they can.

"On the NHS there is no treatment, they just give you steroids and send you home. We don't have Niall on the steroids any more because, for him, in our situation, the bad outweighed the good. He falls all the time and the steroids he was on weakened the bones amongst other things," Mark explained.

"That's why we went to America, there is nothing here for Niall and we didn't want to sit back and do nothing. As soon as we got the diagnosis we promised we would do everything in our power to do whatever we could."

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Despite his pain and frustrations Niall doesn't let DMD get in his way.

"He loves football, he plays with his younger brother Archie who is three. He is much faster but Niall tries and tries. He is very sociable, all of his friends include him and help him out when needed.

"Before going to America he joined Andersonstown Community Football Club and they have all been fantastic, passing the ball to him but Niall knows when to stop, he will sit down and watch and he loves that too, interacting, being sociable is so important to him.

"Going to America might mean that can last a bit longer, if we could even keep him at this stage we would be delighted. We know it's not a cure, you know even after all this time I still get emotional talking about it.

"We keep going and try not to think too far ahead, one day at a time and there is enough going on in our lives now to keep our minds off things."

Last week was just stage one of ­Niall's treatments, he will travel back four more times, three months apart, to complete the course that everyone hopes will change his life.

Just one trip cost £11,000, yet with the help of Alfie's Army, a charity set up in the name of Alfie Pentony, another little lad from Northern Ireland who is suffering from the same condition, and the community, they are getting there.

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Football mad Niall getting the better of his dad in a tackle. Pic Pacemaker

Football mad Niall getting the better of his dad in a tackle. Pic Pacemaker

Football mad Niall getting the better of his dad in a tackle. Pic Pacemaker

"The lads at Tribe Gym raised £12,000 for Niall last week, which is completely mind blowing. That means the next trip is paid for, the flights, accommodation and his treatment or it is two rounds of treatment, either way we couldn't thank them enough," said Mark.

"Others have been fundraising too, people have been so generous, donating to the Alfie's Army Just Giving page, we pay into that, we all club together.

"Alfie's dad Jamie said to me at the start, 'do what you can to pay for your son but if you can, pay for someone else's who might not be able to ­fundraise or gather the money', and we will do that.

"We are a community and we rely on each other for support the whole way, the Duchenne community have been amazing to me and Louise from the start when we didn't know what to do ."

Niall was diagnosed when he was three years old. Their life was blown apart but they are determined to make the most of the cards they've been dealt.

"Louise and I were devastated, at the time, we couldn't come to terms with it, we hadn't even heard of Duchenne then but we quickly realised that life is not to be taken for granted, to enjoy every moment and to make life as best as possible for Niall.

"He knows he is different but he does not know what it's all about, he is too young but one thing is for sure he won't let anyone stand in his way.

"He uses a wheelchair for longer trips but when he is out with his friends he is at his happiest.

"When he comes in at the end of the night he can barley walk he is so sore but he does it all again.

"We try and strike a balance, we don't want him doing too much and damaging himself but look at him. He is a child, he needs to play," dad Mark added.

Naill is just one of the children who are taking part in the trail organised by Alfie's dad Jamie Pentony.

To help Niall and Alfie's Army fight for a better chance of life you can donate to https://justgiving.com/Mark-McCahey2

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