Every day is a struggle 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 in it feels like the air is super hot. It really hurts to breathe in,” Elina said.
“She spent months in the hospital at a time, she is falling asleep at school because her body can’t keep her awake for the whole day. She comes home from school and just sleeps. She is just, like ‘I want to go out and play’ and she can’t because she has to sleep. She is so tired,” Elina’s mom Michelle Childs said.
Cystic fibrosis is a deadly genetic disorder, affecting the digestive system and the lungs.
“12 years ago, I stood in our house and got the worst phone call of my life, hearing that she was diagnosed with cystic fibrosis,” Michelle said.
“On Friday I got another phone call, which I can only described as being the best phone call of my life, and I heard that Trikafta was finally approved in Alberta.”
Alberta, Ontario and Saskatchewan will start covering the cost of the new drug Trikafta to help people living with CF. The medication costs about $300,000 a year, per patient.
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Rather than just treating symptoms, Trikafta targets the basic defect from one specific genetic mutation that causes CF.
According to the cystic fibrosis website, Trikafta could reduce the number of people living with severe lung disease by 60 per cent, and the number of deaths by 15 per cent. It would also add years of life to those with CF. For example, a child born with the disease could see a decade added to their life.
“I think it will help keep me out of the hospital… I hope it will at least give me one day to be a normal kid,” Elina said.
“Her body works so hard to stay alive, I can’t wait till she can put that energy into something she loves,” Michelle said.
Lisa Grono’s two teen children, Sydni and Logan Grono both have CF. After Trikafta was federally approved, the family’s private insurance covered the cost of the drug for both siblings. The teens have now been on it since July and Lisa has seen a big difference.
“The kids are doing really well. Logan’s lung function has went from 86 per cent all the way up to 110 per cent in one month,” Lisa said.
“His cough is gone, his sinuses are clear for the first time ever.”
Lisa said she is looking forward to other families getting access to this life saving drug.
“When we got approved for it we were so happy but when other people don’t have it you can’t be super happy about it yet. We could celebrate a little bit, but it didn’t feel right yet. But now it feels right,” Lisa said.
“Going forward for all the babies born now, all the people who have CF, this is a life changing miracle drug.”
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