I tucked my little girl into bed as usual – hours later she was gone… it feels like yesterday she was sit on my knee | The Sun
A DEVASTATED father who lost his daughter to a rare heart disorder will run 31 miles throughout January in her memory.
David Hutton knew something was wrong when he tucked six-year-old Isla into bed.
“She climbed into bed but wouldn’t settle down,” the 38-year-old told Manchester Evening News.
“It was just desperation because I knew something wasn’t right.”
Isla was rushed to a nearby hospital but tragically passed away on October 8, 2022.
While her cause of death is not yet clear, it’s believed Isla may have gone into cardiac arrest or suffered a seizure due to a pre-existing condition.
Isla was diagnosed with long QT syndrome, or LQTS when she was born.
A disorder of the heart’s electrical system, the condition can cause fast, chaotic heartbeats (arrhythmias) and affects one in every 2,000 people.
The condition meant Isla’s heart muscle took longer than normal to recharge between beats and she was at constant risk of sudden fainting.
Doctors discovered something was wrong with Isla's heart in the days following her birth.
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At just two days old, she was quickly transferred to Alder Hey Hospital in Liverpool and fitted with a pacemaker.
In order to look after his daughter, David, who lives in Ainsworth, gave up his job as a primary school teacher to become her full-time carer.
“Life just feels so different,” he continued.
“I was by her side in hospital the whole time. Time seem to flash by but it was like slow motion. I wouldn’t have wanted her to be suffering. If she came back around, I wanted her to still be the happy little girl she was. She was the happiest little girl you could have ever met.”
During her life, Isla became the mascot for Thryv Therapeutics, a biopharmaceutical company developing inhibitors to treat conditions like long QT syndrome.
With Isla's help, company has secured more than $15m for drug research in the US.
David said: “While bittersweet, it is a huge comfort to me knowing that Isla’s story has inspired a potential cure for long QT and is helping in the battle against cancer.”
David has now pledged to raise cash for the hospital that helped treat Isla throughout her life to honour her memory.
He will be running 31 miles throughout the month of January to fundraise for Great Ormond Street Hospital and Children’s Charity.
So far, he has accrued a staggering £4,200.
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You can donate to David's cause by clicking here.
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