Myles Gibbs had been an active child until the age of four when his parents realised something was wrong, but they had to wait four years for a diagnosis
Image: Liverpool ECHO)
A family who for years were told ‘not to worry’ about their son were devastated when he was diagnosed with a rare fatal disease.
Myles Gibbs, nine, loved running around as a youngster and taking part in extreme activities such as mountain and rock climbing.
When he turned four his mum and dad, Matthew and Jane, noticed a change in their son and took him to see doctors who assured him he was ‘fine’.
It took four years for Myles Gibbs’ family to finally be given a diagnosis, the Liverpool Echo reported.
They continued to see specialists over several years as they could see he was getting worse before eventually their own research brought up the term ataxia – a disorder which can cover disorders such as balance and speech.
To their horror Myles was finally diagnosed with neurodegenerative movement disorder Friedreich’s Ataxia just before his eighth birthday.
Matt, 50, said: “I was in denial at first because when it was suggested as Friedreich’s Ataxia, it’s one of the most devastating things he could have had.
“With that type it basically means deterioration and detonation of everything besides his brain.
“We finally got the diagnosis but by then I think it was too late. Our world fell apart and our worst fear came to light. It felt like the end of the world.
“From then different specialists came into it but I started to feel like there was no future.
“Everything started to deteriorate from there and now the only thing he can really do is go in a swimming pool.”
At the start of the pandemic, Matt and Jane purchased a Lay-Z spa so Myles could continue to remain active but Myles began to ‘decline a lot faster’.
But when a Google search suggested he had a life expectancy of around 30, the youngster’s mood was hurt even more.
Matt added: “With him coming back to school and being around able-bodied people it has been quite difficult for him and he is becoming a lot more self aware.
“Now he can go on the computer, he’s been googling what he has and saw ‘life expectancy of 30’. It’s affected him mentally and we now have issues where he even says he wants to die.
Matt is now fundraising to buy his son, whom he describes as ‘really really clever, funny, lovely, cheek with a dark sense of humour’, a wheelchair so he can move around.
He added: “We need to instil hope and positivity and a future to look forward with resilience.”
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George Holan is chief editor at Plainsmen Post and has articles published in many notable publications in the last decade.