Every day is a fight for 12-year-old Elina Childs. The Edmonton girl has cystic fibrosis (CF) and her body is always working in overdrive. She struggles to stay awake throughout the day and every breath she takes is painful.
“My lungs feel frozen. Whenever I breathe I feel like the air is very hot. It really hurts to breathe, ”Elina said.
“She spent months in the hospital at a time, she is falling asleep at school because her body cannot keep her awake all day. He comes home from school and just sleeps. She’s like ‘I want to go out and play’ and she can’t because she has to sleep. She’s so tired, ”said Elina’s mom, Michelle Childs.
Cystic fibrosis is a fatal genetic disorder that affects the digestive system and lungs.
“12 years ago, I stopped by our house and received the worst phone call of my life to hear that she had been diagnosed with cystic fibrosis,” said Michelle.
“On Friday I received another phone call, which I can only describe as the best phone call of my life, and I heard that Trikafta was finally approved in Alberta.”
Cystic fibrosis life-altering drug is close to patient access nationwide – Health Canada
Alberta, Ontario and Saskatchewan will begin to cover the cost of the new drug Trikafta to help people living with CF. The drug costs about $ 300,000 a year, per patient.
Rather than just treating symptoms, Trikafta targets the basic defect of a specific gene mutation that causes CF.
According to the cystic fibrosis website, Trikafta could reduce the number of people living with severe lung disease by 60% and the number of deaths by 15%. It would also add years to life for people with CF. For example, a child born with the disease could see a decade added to his life.
“I think it will help me stay out of the hospital … I hope it gives me at least one day to be a normal girl,” Elina said.
“Your body works so hard to stay alive, I can’t wait until you can put that energy into something you love,” said Michelle.
Lisa Grono’s two teenage sons, Sydni and Logan Grono, have cystic fibrosis. After Trikafta was approved by the federal government, the family’s private insurance covered the cost of the medicine for both siblings. Teens have been on it since July and Lisa has noticed a big difference.
“The children are doing very well. Logan’s lung function has gone from 86 percent to 110 percent in one month, “said Lisa.
“His cough is gone, his sinuses are clear for the first time.”
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Lisa said she hopes other families will have access to this life-saving drug.
“When we were approved, we were very happy, but when other people don’t have it, you can’t be too happy about it yet. We could celebrate a bit, but we still weren’t feeling good. But now it feels good, ”Lisa said.
“In the future, for all the babies born now, all the people who have CF, this is a miracle drug that changes life.”
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