His parents said he is a “bright, kind soul who deserves every chance at a fuller, more independent life.”
A family from West Belfast are appealing to get treatment for their young son’s rare condition. Eli Hicks began showing symptoms when he was a baby, but it wasn’t until he was six-years-old that he was formally diagnosed with COL6 Muscular Dystrophy.
The rare genetic condition affects every aspect of Eli’s mobility. Simple things many take for granted, including walking, standing, and everyday movements, are challenges the young boy faces with determination.
Despite the challenges he comes up against everyday, the nine-year-old continues to inspire everyone who meets him. His parents, Louise and Brian, said he is a “bright, kind soul who deserves every chance at a fuller, more independent life.”
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There are no cures for the condition, only treatments that can improve his quality of life and keep his mobility. After extensive research, his family have found an experimental treatment at a clinic in Serbia they say offers “real hope for improvement.”
Speaking to Belfast Live, Eli’s parents Louise and Brian said the community support behind their fundraiser so far has been “brilliant,” with the family aiming to raise £35,000 to kick-start his treatment.
“When he was a baby, professionals in his creche noticed when he started walking, he was having a lot of falls, and they flagged it to us,” Louise explained.
“We had been back and forward to the doctors, had been trying new shoes and doing things like getting his eyes and ears tested. We then noticed through his peers that he wasn’t as quick. With walking and running, and climbing, he never really did learn how to jump or run.
“We took him to our GP and he fell in the surgery, so they realised there was an issue then. He was referred to paediatrics in the Royal, which took over a year, then he was transferred to neurology, which was another year or two.
“When they tested Eli to begin with, they tested his CT levels, which in most forms of muscular dystrophy are quite high; they’re in the hundreds of thousands. Eli’s was normal, so they knew that he had some sort of myopathy, but they couldn’t pinpoint it.
“He had a muscle biopsy, but the muscle fibres were far too small and they couldn’t even test them at that stage, so they had said that Eli’s muscle mass at that point was 25% of another child his age.
“We had genetic blood testing done, which was sent to Great Ormond Street and took almost two years to come back as well, so his official diagnosis didn’t come until he was six.”
As for how he is faring with his symptoms now, Louise said he can fall up to 30 times a day, but that he is determined to play and live like other kids.
She added: “He falls a lot and can’t pick himself up off the floor when he does as he doesn’t have the strength. He can’t manage stairs, doesn’t run or jump.
“But he’s really independent and determined, he won’t let anything hold him back. Eli wants to play in the same way as every other kid in the street and in school does, he won’t have any adaptations made for him. He wants to be able to do everything in the same way as everybody else.
“So far he is a part-time wheelchair user, and it’s mainly just due to exhaustion, so if we’re on long journeys, he’ll need a wheelchair just for a bit of a break. But he absolutely hates the thought of it and would rather fall on his face than get into it, he’s that determined.”
Currently, the family said there is no cure for the condition, but there are treatments that could help slow its progression. They are now in contact with a clinic in Serbia offering stem cell therapy, which could help Eli stay mobile by helping to restore muscle function and slow disease progression.
The family are raising funds to put Eli through two rounds of treatment, with the first costing £18,000.
Brian said: “We’ve put our names down for every clinical trial all over the world, every country. This clinic in Belgrade are doing stem cell therapy, and they’ve been doing it for around 10 years.
“Although it’s not a cure, from people who we’ve reached out to who have also received the treatment, they have seen benefits of the tail end of it. It makes things a bit easier, so the likelihood is Eli will ultimately lose his ability to walk over the next few years.
“Then the disease will progress to all of his muscles, which includes your heart and your lungs. The thing with this treatment is, the longer any of these kids with any form of muscular dystrophy stay on their feet, the longer it keeps things at bay for attacking the likes of their lungs, breathing issues and their heart.”
Louise added, “It may not massively make him stronger, but it’ll help with fatigue and falls, and if anything, it’ll help with his mindset, too.
“There’s a lot of research going on at the minute for potential cures or treatments for what Eli has, collagen 6 myopathy. So with this treatment, if it keeps him mobile, if in a few years’ time a potential cure comes out, he would be eligible if he’s mobile. If he loses his mobility, it would eradicate him from being able to take part in trials, as they’re always only done for people who are still mobile.”
In just over a week, the family have raised around £8,000 towards treatment. They have thanked the community for their help so far.
Louise said: “We’ve been blown away by the support. For the two treatments, we need £35,000, so we’ve based it on two treatments, because they said one might not be enough, and two is when we’ll know if it’s actually helped at all.
“But it’s going to be ongoing, because if it does work, it will happen either once or twice a year. If we could get £18,000 for the first treatment, we could start that treatment this year, then fundraise for further treatments. We would then have six months to get funds together for the second treatment.
“People are so kind. We’ve seen a lot of kindness from strangers. There have been a lot of anonymous donors who have given big amounts; some have given £200, some £800. I just find that incredible that people are willing to do that for strangers.”
You can find out more and donate to the fundraiser for Eli by clicking here.
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