KANSAS CITY, Mo. — Annaka Haynes was born with cystic fibrosis, a diagnosis that typically has a life expectancy in the late 30s. But a breakthrough drug has created what she calls a miracle.
"My lungs just have all this extra mucus or bacteria in them and that just causes me to struggle to breathe a little bit more than anybody else," Haynes, 17, said.
All her life, she has taken dozens of pills and done breathing treatments each day. All of this to stay alive.
"She's definitely resilient," Jennifer Haynes, Annaka's mother, said. "Annaka has a passion for life that most kids don't have. I think her friends and the people around her see that."
That's because cystic fibrosis isn't who the teen is, it's just part of her life. Annaka loves theater, cheer and dance. Only a couple years ago though, her health had taken a turn.
Dr. Hugo Escobar, a pediatric pulmonologist at Children's Mercy Hospital in Kansas City, said Annaka has had "pretty severe" cystic fibrosis since she was little.
"She was also colonized with some bacteria that were very difficult to treat and she had more significant lung damage," Escobar said, adding, "But with the treatments and the antibiotics we were doing, we were not able to decrease the decline in her lung function."
Then, she was invited to take part in a clinical trial for the drug Trikafta.
"Trikafta is a combination of three medications," Escobar said. "We, here at Children's Mercy, we have been part of the research on these medications from the beginning."
Two pills in the morning and one at night.
Her CT scans immediately started improving.
"You could see all the mucus plugging in her lungs before, and it just looked like little bubbles all over her lungs and now you don't see that," Jennifer Haynes said.
Annaka Haynes' lungs went from 34% function to 57% in a matter of months. For many children with cystic fibrosis, the life expectancy is 37 years old.
Now, Jennifer Haynes told KSHB 41 News, her daughter could live to be 70, 80 or even 90.
"We don't know because we're still seeing some improvement, and that's what's really exciting," Jennifer Haynes said.
Even Escobar is thrilled with the results.
"For many years, we didn't even think that this was going to be possible," he said. "I think that when we do these clinical trials, we hope to have great improvements in health but the degree that we see of improvement, it was beyond what we were expecting."
He credits the research coordinators at CMH for working tirelessly through the COVID-19 pandemic to ensure the trial was completed, so the FDA could grant approval. That approval is now extended to children ages 6 and up. Escobar said they already are starting all eligible patients on Trikafta.
"It's definitely a miracle," Annaka Haynes said. "Without it, I don't know where I'd be right now. Honestly, without it next year I'd probably be on my way to getting a lung transplant considering my numbers were going down so much. So it's definitely been a miracle and it's been a miracle for everybody."
