Cambridge girl with incurable disease desperately needs new lungs
KITCHENER -- Amelia Harris is hoping to defy the odds.
The 11-year-old Cambridge girl was diagnosed last summer with pulmonary hypertension, a rare disease that causes increased blood pressure within the arteries of the lungs.
Amelia was told in September that she may die from the disease in the next year.
Her family is now hoping for news that will save their daughter’s life.
Amelia was looking forward to starting Grade Six and spending time with her friends like other young girls do.
Instead she’s been in and out of Sick Kids Hospital in Toronto.
“Everything seemed to be taken away from her in a blink of an eye,” says her mother Nicole Gillespie.
Amelia was diagnosed with pulmonary hypertension after she went into heart failure during a family trip to Prince Edward Island.
It’s hoped a new set of lungs will drastically improve Amelia’s quality of life.
“I feel better now,” she says. “My belly still hurts. My mom and dad make me feel better.”
If approved, Amelia would become the first child with Down Syndrome in Canada to get a double-lung transplant.
The disease has had a huge impact on Amelia’s day-to-day life including taking away her ability to play with her little brother who she calls her best friend.
“She’s at home because she can’t afford to get a virus of any kind,” says her father Brad Harris. “It would be catastrophic. She has every reason to be sad and depressed because of her quality of life. But she’s taking it in stride. She keeps us going.”
Later this week Amelia’s case will be presented to doctors at Mount Sinai Hospital. They’ll decide whether she’s eligible for a double lung transplant.
Until then the family is trying to make Amelia as comfortable as possible.
“The disease is so rare nobody knows about it,” says Harris. “It’s so rare, that’s the reason why there’s no cure for kids.”
A GoFundMe page has been set for the family to help with their expenses.
“You weigh the risks with the amount of time we’ll have,” says Harris. “There’s no question. We need her to have lungs.”