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Heartbreaking moment boy, 9, Googled his illness and discovered life expectancy
19.01.2022 - 11:57 / manchestereveningnews.co.uk
A family have spoken about the devastating impact that their 'active' and 'adventurous' son being diagnosed with a rare fatal disease has had.
Matthew and Jane Gibbs' son Myles enjoyed rock climbing, climbing mountains and was even nicknamed ‘Speedy Gonzales’ by his parents due to his love for running around from such an early age.
According to his parents, Myles was 'completely normal' up until he was four-years-old but one day they started to notice slight changes in their son which ‘only a parent would see’.
READ MORE: 'Fit and healthy' schoolboy, 7, died after collapsing in class
Matthew, of Birkenhead, Wirral, told the Liverpool Echo : “We started noticing things like you do as a parent, such as his foot coming out to the side.
“We thought we needed to get it sorted in case it's a long term thing, so we went to doctors and we were told ‘he’ll grow out of it’, ‘he’ll be fine’.
“We kept going back and at one stage saw a specialist who was trying to say it was dyspraxia but we knew it was different.
“It ended up being a long long journey of seeing different people and different specialists who were saying there is nothing wrong with his bones, but it was getting worse and we could see it.”
Matt and Jane 'continued fighting' for a number of years, seeking advice from different specialists and hospitals and each time being told something different - the only information that would remain the same was that Myles wasn’t a cause for concern.
Through their own research, the couple kept coming across mention of ‘ataxia’, a term that covers group of disorders that affect coordination, balance and speech and the severity can depend on the type the child has.
Matt, 50, said: “We decided to go along to a group at The Brain
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