by Syerra Turry in the Cambridge Times
Amelia Harris has been defying the odds since before she was born, but that doesn’t make her battle any easier.
“She needs new lungs and she needs them now,” says Brad Harris about his 11-year-old daughter.
Amelia was diagnosed with pulmonary arterial hypertension on July 13. The rare and life-threatening (especially in children) disease is marked by increased blood pressure in the arteries that go from the lungs to the heart.
Shortly after the diagnosis, the Harris family — Brad, Amelia, Nicole (mother) and Nioclas (brother) — headed to Prince Edward Island for a much-needed family vacation.
The trip was cut short when Amelia went into heart failure.
Her family rushed her to McMaster Children's Hospital, where she was admitted on July 31.
Amelia was supposed to have a cardiac catheterization surgery in early August to determine which medications could safely be administered to slow down the pulmonary hypertension; however, at that point, there had been too much damage to the right side of her heart to safely operate.
It wasn’t until Sept. 1 that Amelia was discharged and learned she would not be starting Grade 6 that week.
A week after being home, doctors told the Harris family Amelia has anywhere between two months to a year to live.
At the end of January, doctors found issues with her liver and a low platelet count. Amelia has also been diagnosed with Acquired von Willebrand Syndrome, a rare bleeding disorder that prevents blood from clotting properly.
“The pulmonary hypertension is destroying her platelets and the only way to fix that is a double lung transplant,” says Nicole before looking over to Amelia to say, “We got this.”
On Feb. 20, Amelia will be presented at Mount Sinai Hospital in Toronto to find out if she is eligible for the transplant.
With new lungs, Amelia’s right ventricle will start to repair itself and she won’t need to be on as many medications. The eight medications she’s on – each taken once to three times daily – make her nauseous and ill, says Nicole, but, “Amelia will look over to me and say, ‘I got this.’”
“If Amelia is listed, she’ll be the first child with Down syndrome in Canada to get a double lung transplant,” Brad says.
Amelia loves school, swimming and playing in the backyard with her brother — none of which she’s been able to do since before the diagnosis.
“He’s lost his best friend,” Brad says of Amelia’s eight-year-old brother, Nioclas. “They’re best buds, but they can’t play like they used to.”
The financial burden of frequent hospital trips – between gas and parking prices – has been a big stress, Brad says. Luckily, Amelia’s machine and medications are covered. Otherwise, the Remodulin pump alone would cost $17,000 per month, her parents say.
Right now, Amelia finds herself in the hospital roughly twice a week.
Nicole now stays home with Amelia on compassionate care after the pediatric aftercare team helped set up an at-home hospice.
Nicole sleeps with Amelia at night, ensuring her oxygen levels stay where they need to be, and will let her sleep in while getting Nioclas ready for school.
Once he’s off, the mission is to get Amelia to eat something, which is difficult because the medications make her nauseous, but taking the medications on an empty stomach is even worse.
“Our day is basically based around her care, but I’d much rather be at home with her than at a hospital,” Nicole says.
Through it all, Amelia’s spirits have remained high, Nicole says. “I don’t know how she has managed to stay happy. She’s stronger than me, and so, so brave.”
When Nicole was pregnant with Amelia, doctors noticed she had hydrops fetalis — a life-threatening condition in some fetuses and newborn babies, caused by buildup of fluid around the lungs, heart or abdomen.
At 18 weeks, Nicole was told Amelia would also have congenital heart disease and Down syndrome. Doctors recommended she terminate the pregnancy because they didn’t expect Amelia to make it to term.
Nicole continued going for weekly ultrasounds and, between five and six months into her pregnancy, she learned the hydrops had reabsorbed.
“She’s been a little miracle since before I even knew she was,” Nicole says.
Right now, the Harris family are thinking of things they can do with Amelia in the interim. They’re planning a prom for her next month, which Zehrs has volunteered to cater for them, and are working on finding other community partners to help put it on.
“We just live each day the best we can. That’s what’s important right now. Every day is the best day ever, right?” Nicole asks Amelia.
“I want awareness and I want people to know about Amelia,” says Brad. “Some people tell me, ‘at least she doesn’t have cancer,’ but there’s a cure for that.”
The parents hope to raise awareness about pulmonary hypertension in children, since there is currently no cure for the condition.
The family also has a GoFundMe account set up to help alleviate the financial stress.
“We just keep pushing forward and hope there’s a lung transplant in our future,” says Nicole.