TOPEKA, Kan. (KSNT) – The Cystic Fibrosis Foundation reports more than 30,000 people are living with the disease in the U.S. today.
One Topeka family proves it’s genetic.
Fifteen-year-old Cristabel Juarez, 10-year-old Mila Juarez, and 4-year-old Aurora Juarez are all diagnosed with cystic Fibrosis. And it has a significant impact on the family.
“Our life with cystic fibrosis is very crazy at home, but it’s just what we know, it’s what we do every day,” says mom Danielle Juarez.
But now there is new hope with a new drug called Trikafta, which was just approved by the Food and Drug Administration for patients 12 years or older with cystic fibrosis.
Cristabel was a part of a study for the drug.
“It’s new territory for us, but it’s been a heaven-sent and game changer for our family. Cristabel, her lung function was at base level in the low to mid 60’s. She was in the hospital quite frequently, at least every three months and she was not doing so well,” said Danielle. “When we started on that drug (Trikafta), within a week she started feeling better. After two weeks her lung function shot up to high 90’s, and she has been steadily gaining weight.”
“So when you see that change and when it happens to a family where there are multiple kids, even though they can’t all take the medicine right now, it’s still a really good uplifting situation,” said Dr. Michael Lewis, the Pediatric Cystic Fibrosis Program Director at the University of Kansas Health System.
Now doctors are waiting for FDA approval for the drug to be given to people 6 years and over.
Aurora, the Juarez’s youngest daughter, was in the hospital in December, but thankfully was well enough to make it home in time for Christmas.
For more information on Trikafta visit: https://www.trikaftahcp.com/sites/default/files/clinical-brochure.pdf
The video and interviews in this story were shot by The University of Kansas Health System’s Medical News Network.