Living with the genetic disease cystic fibrosis can mean a lifetime of medical tests and doctor's appointments, but a Dallas four-year-old is proof that the disease doesn't have to slow you down.
Quincy Clark was one week old when doctors diagnosed her with cystic fibrosis, a progressive, genetic disease that causes persistent lung infections and limits the ability to breathe over time.
"As a new mom, as new parents, we were just getting used to having a new baby and not really knowing what to do or how to do anything. We just surviving, but that kind of really threw us off and shook our world," said Quincy's mother Sadie.
As time went on, Quincy was having a difficult time gaining weight and taking her medication.
In September 2019, Quincy had surgery to place a gastronomy tube for her to receive the nutrients she needed to promote her development.
Today, Quincy is a spunky 4-year-old who loves music and dancing.
"She is super spunky, animated, confident and beautiful," said Sadie.
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Now, the family has new hope in a drug recently FDA approved for use in patients as young as six.
Trikafta is a combination of three medications that treat cystic fibrosis by targeting the proteins that don't work properly and cause the lungs and digestive system to get clogged with mucus.
Pediatric gastroenterologist at Children’s Health and associate professor at UT Southwestern Dr. Meghana Sathe, M.D., says this could simplify a patient's treatment plan.
"This drug is really a game-changer. It is decreasing inflammation, not only in lungs but in the entire body. It's improving patient's nutritional status and will really have impact on longevity," said Dr. Sathe.
"I used to tell patients, 'once you get a gastrointestinal tube, I am not taking it out,' but I've been able to take out several this year," said Sathe.
While it may be few years before Quincy can get on the new medication, the Clarks are excited about her future and how cystic fibrosis won't stop their daughter from living the big life she is destined to lead.
"As long as she knows who she is, and I think she's already shown us that she does, then I am not worried about her," said Sadie.
The new medication is not a cure for cystic fibrosis, but studies are being done to see whether it can reverse it.
Since 2005, all newborns in Texas have been screened for cystic fibrosis.