EXCLUSIVE: 'Our happy little boy will die without a stem cell transplant but we can't find a match... we're desperate'
The seven-year-old, nicknamed Finn the Fabulous, is just one of a handful of people worldwide with a rare condition that makes his brain dangerously swell.Credit: Belfast News & FeaturesThe seven-year-old is one of a handful of people across the world who suffers a rare condition that makes his brain dangerously swellHis illness is being kept at bay with steroids, but doctors have told his worried parents, Jo and Paul Hill, that his only hope of long-term survival is a stem cell transplant.
“I remember thinking it was unusual when he said ‘Mummy my head hurts’,” said Jo. “It’s not often young kids get headaches.” “A couple of weeks later I was in my bedroom packing,” said Jo. “It was August 2016 and we were due to fly out to Ibiza on holiday. "They wouldn’t say any more… it was terrifying. But when I asked if I should pack a bag, they told me I didn’t have time.After taking Finn to the GP he was referred for scans at hospitalWeeks later, just before Jo and Paul were due to take Finn on holiday, they got a panicked call from the hospital, asking if their son was 'pink and breathing'In hospital, Jo and Paul, who run their own garden centre business, were told that Finn had swelling on his brain.
Eventually, in August 2017, Finn was diagnosed with Clippers Disease, a condition so rare that there are only around 60-70 known cases worldwide.
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