By Kathy Walsh
AURORA, Colo. (CBS4) – Doctors say the average life expectancy of a patient with cystic fibrosis (CF) is about 40 years. A teenager from Aspen with CF isn’t wasting any time helping find a cure.
Lily Royer is just turning 17, but she’s already got a business making and selling greeting cards. CF is a terminal disease, but Royer is using her time to help herself and others.
Breathing doesn’t come easy for the teenager. Every three months she goes to Children’s Hospital Colorado from her home in Aspen to check her lungs.
“It can be hard sometimes,” Royer told CBS4 Health Specialist Kathy Walsh.
She wasn’t quite a year old when she was diagnosed with CF, a progressive, genetic disease where a defective gene causes the buildup of thick mucus in nearly every organ.
“Over time it makes it very difficult for patients to breathe,” explained Dr. Stacey Martiniano, Pediatric Pulmonologist at Children’s Hospital Colorado.
Royer devotes three hours a day to treatment, including using a vibrating vest to clear her airways. The rest of the day she’s busy being a teenager with school, friends and sports.
“As long as I’m getting my treatments and everything, I can still do everything else that my friends can do,” said Royer.
“But the reality is that, still, the average life expectancy for someone with cystic fibrosis is 40 years old,” said Martiniano.
CF doesn’t affect Royer’s brain or her heart. Two years ago, she was sick with pneumonia when her little brother made her a beautiful picture of a heart.
“It was just a little paper card,” said Royer.
That inspired a business she named Lilybart. She learns from artists, then makes and sells greeting cards. Some are based on Royer’s paintings. Others she creates with her mother.
“My mom and I do these little cut-ups with magazines so they’re like collage work,” explained Royer.
Sharing her success, Royer launched a nonprofit to help other kids with CF, raise awareness and help find a cure.
“They’re working on it and maybe not in my lifetime, but I know they’ll get there,” said Royer.