Hull teen with rare heart defect defies odds to thrive
- Published
Kirsty said she appreciated the time she has been able to spend with Freddie
The mother of a boy given six months to live 13 years ago says it is a "miracle" he is still alive today.
Freddie, 14, from Hull, has supravalvar aortic stenosis, a condition which causes the narrowing of the arteries near the heart valve.
He was diagnosed by doctors in May 2009 who broke the news to his mother Kirsty that corrective surgery was not possible.
She said: "I am just so grateful that I've been able to get to know my boy.
"It's a miracle he's still here, I appreciate all this extra time I am having with him."
Leeds General Infirmary experts have told the family they have "no idea" how Freddie has survived this long, Kirsty said.
Supravalvar aortic stenosis occurs in one in 20,000 babies born, according to the US National Library of Medicine.
Freddie's sister Amelia, 21, also has the condition but, unlike Freddie, was able to undergo surgery to correct it and is now in her final year of a nursing degree at University of Hull.
Freddie with his sister Amelia
Freddie continues to have annual check-ups in Leeds.
"I can't do as much stuff as I'd like but I'm just getting on with life as best as I can," he said.
Kirsty said the family had been "devastated" when they were given the initial diagnosis.
"Driving home from hospital, it hit me. I remember just wanting to curl up into a ball," she said.
"But we all picked ourselves up and said we'd live for each day."
Freddie, pictured when he was younger, is described as "cheeky" by his family
The family, who have taken precautions throughout the coronavirus pandemic, are now planning to celebrate Freddie's 15th birthday.
Celia McKenzie, head of nursing at Leeds Children's Hospital, said: "It's always a great joy when those born with rare and severe illnesses achieve such milestones and go way beyond the limitations of their illness."
Kirsty said she was aware Freddie could collapse at any moment and does not "plan too far ahead".
"I went through a stage of really panicking," she said.
"But my mum always said 'where's there's life, there's hope' and that's how we now choose to lead our lives."
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