KITCHENER -- A Cambridge family is mourning the loss of their young daughter who never got the double lung transplant she desperately needed.
Amelia Harris died on Friday.
The 11-year-old was diagnosed last summer with pulmonary hypertension, a rare disease that causes increased blood pressure within the arteries of the lungs. At that time doctors believed that she only had months to live.
The disease had a huge impact on Amelia’s day-to-day life. She was in-and-out of Sick Kids Hospital in Toronto and she wasn’t able to play with her little brother whom she called her best friend.
Amelia’s family had hoped she would become the first Canadian with Down Syndrome to be approved for a double lung transplant.
But those hopes were dashed after doctors at Mount Sinai Hospital decided to the surgery would be too dangerous. Amelia’s family says the disease destroyed the right side of her heart and also damaged the left side. It also caused an enlarged liver, as well as a new blood disorder. Doctors felt that it would be medically irresponsible to use anesthesia as they believed Amelia would not survive the surgery.
Their goal was to help manage Amelia’s pain while keeping her at home with her family.
Her parents, wanting to make the most of their time together, even organized a “prom” for Amelia.
She died Friday at her home surrounded by her parents and brother Nioclas.
Family and friends are invited to celebrate Amelia’s life at the Lounsbury Funeral Home on Monday between the hours of 4 p.m. and 7 p.m.
Donations in Amelia’s memory can made to the Pulmonary Hypertension Association of Canada.
