Regina family hopeful for a cure for cystic fibrosis
At first glance, Ella McDougall is your average eight-year-old.
“I like to go outside and play on the trampoline, and I like to play house,” said the young girl with long, dark curls and a big smile.
But her time to play is cut short by hours of demanding physical therapy, medication, and other treatments every day.
“Cystic fibrosis is a sneaky disease,” Ella’s mom, Twyla, said. “You look at Ella and you’d have no idea there’s anything wrong with her, but she has to work really hard.”
When she was only a few weeks old, Ella was diagnosed with cystic fibrosis, a genetic disease that affects the lungs and digestive system.
It is estimated that one in every 3,600 children born in Canada has CF.
“Ella was actually in a failure to thrive situation for her first three years,” Twyla noted. “That was really dangerous for her. She ended up having to get a little tube in her stomach. Every morning she starts out with a formula so she gets an extra 1,000 calories to maintain a healthy weight.”
On a good day, Ella’s treatment routine takes two to three hours. New technology has cut that down dramatically and given her more independence over her care.
“This helps to get the mucus out of my lungs,” Ella explained as she put on a small airway clearance vest. “It takes about twenty minutes.”
As it stands, there’s no cure for CF — but it’s not for a lack of trying.
“Research has never looked so promising,” Cystic Fibrosis Canada spokesperson Jennifer Nebesky said. “Every CF journey is different. There are over 2,000 mutations of the CF gene, so there is no one-size-fits-all treatment. Now, because of the investment in research, people with CF are living well into young adulthood.”
When Ella was born, the median life expectancy for someone with cystic fibrosis was 38. Eight years later, it’s increased to 52.
“I went in there thinking my daughter had been given a death sentence,” Twyla admitted. “But that day I walked out of there with hope.”
But breakthroughs are still just out of reach, and in the meantime, every day is a fight for the bright little girl.
“It’s hard,” Ella said. “You have to do treatment every day and it’s extremely hard to live with it. I wish I could go in the hot tub. I wish I could eat dairy. I wish I could do a lot of things.”
Most of all, she wishes to travel to Africa as a missionary.
“I don’t want CF to be something that holds her back from having crazy dreams and being able to seek them out,” Twyla said. “She’s incredible with her attitude. There are still rough days, but she has a real level of compassion for people, a real heart for understanding and a desire to help others.”
Cystic Fibrosis Canada is ramping up fundraising efforts for new research and help for families like the McDougall’s, whose medical bills would otherwise skyrocket into hundreds of thousands.
While there are many difficult questions in Ella’s future, the group is hopeful medical advances will change them for the better.
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