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Parents of a teenager, Kyle, diagnosed with an aggressive rare form of motor neurone disease are urgently seeking worldwide treatment options. After initial misdiagnosis and multiple scans, genetic testing confirmed a FUS-related condition, leading to a global plea for information on potential therapies and clinical trials.
Family Prays for Miracle as Teenager Diagnosed with Aggressive Form of Motor Neurone Disease The parents of a young teenager who has been diagnosed with an aggressive form of motor neurone disease have made a global appeal for information on treatments that might prolong his life.
Kyle’s symptoms started back in February with a pain in his leg. After inconsistent limping, his balance being off and increasing pain, they found a fracture in his hip. Kyle and his parents were told to wait four weeks for it to heal with lots of rest.
“His fracture had healed, but Kyle's limp had gotten progressively worse,” said Linda. Doctors advised them to wait another four weeks for the brain to rewire after the injury. A month later, Kyle’s parents took him straight to Temple Street Hospital in Dublin as it became clear something very serious was wrong.
“We had brain scans, neck scans, full spinal, hip and pelvis scans and a lot of general blood work in the space of two days and everything was coming back clear. We were allowed to go home, and we were still very hopeful that this was going to resolve itself. We had a holiday planned for Tenerife,” she said.
“We went back to Temple Street, and they redid all of the scans. You had to go through a lumbar puncture, and this is when they did all of the genetic blood tests, they were all sent off to Germany,” she said.
“The minute they got the results back, I got the phone call to come in. That’s when they told us the worst possible news, the worst possible outcome. It’s super rare. There’s no cure.
It’s very life-limiting,” she said.
“We were shocked, we were floored, I was crushed. It’s just been the most horrific and upsetting time. ” Kyle was diagnosed with a form of motor neurone disease, “it’s something to do with the gene FUS, which makes it super rare,” Linda told Andrea Gilligan. Linda's medical team, including Professor Orla Hardiman, is investigating global options and trial drugs.
“Trial drugs are very restricted. Unfortunately, unless something comes up, the prognosis will stay as it is. His life is extremely limited. Probably 12 months if we’re lucky,” she said.
Linda said how Kyle has global developmental delays, which means he’s very childlike. She said that he’s loved by everybody in his school, his community, family and friends. That he loves all kinds of sports and he’s “just the most lovable, happy-go-lucky child”.
“She took it upon herself to try and get some fundraising so we can make memories with Kyle in the short time that we have. She’s organising a benefit night as well, which will be on the sixth of November, I believe,” she said.
“We appreciate everything from everybody and the support, as I said, and honestly. It just really does help us. That strength and hope. If everybody could just pray for a miracle, for some kind of drug to appear to prolong his life.
If they can't cure it, but slow the progression down. That’s all we’re really asking for,” Linda said. Motorway Drivers Are Changing Their Driving Habits After Fatal Crash, Data Shows
Motor Neurone Disease Rare Genetic Disorder Patient Advocacy Global Health Clinical Trials
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