HERMOSA BEACH (CBSLA.com) — A Redondo Beach teen is working to help families deal with cystic fibrosis — the emotional and the financial costs.
CBS2’s Health Reporter Lisa Sigell recently met up with 17-year-old Claire Wineland and talked to her about her passion.
“I want to do everything and anything I can possibly do to show that I’m alive,” she said. “I want to get fully submerged in everything.”
Claire was born with cystic fibrosis, an often fatal disease that attacks the lungs.
She has beaten the odds more times than her family can count.
“Since she was born, the doctors were telling us, she won’t live to be 10. She will never be a teenager,” says her mom Melissa Nordquist.
An infection five years ago put Claire into a coma. The infection damaged her lungs and left her dependent on oxygen 24/7.
Sigell reports the pediatric ICU at Miller Children’s Hospital in Long Beach is literally her second home.
“We’ve spent a third of Claire’s life in the hospital almost,” says John Wineland. “You have to make it home in some way.”
There is a lot of pain and suffering and sadness in a hospital — especially one with sick children. Claire’s attitude has always been, “I’m still living.”
She knows there is a huge challenge, often, for families coping with catastrophic illness.
Making ends meet would be such a challenge, even when both parents work.
“I was always so stressed out with her in the hospital and me not being there,” Nordquist says. “Even the most understanding boss needs you at work.”
Nordquist ended up quitting her job but the financial stress on the family was equally challenging to the emotional toll.
“It takes a tremendous amount to support to keep these children healthy and keep them going,” Nordquist says.
Friends and family donated to keep Nordquist at Claire’s side.
Now Claire and her family are raising money to help other cystic fibrosis parents stay with their hospitalized children.
“Claire’s Place Foundation” hosts its next fundraiser Saturday at sunset in Hermosa Beach — a moonlight glow ride.
“It has to be fun, it has to be easy for kids,” says Claire.
As Claire put the finishing touches on her bestie’s bike, the pros at Hermosa Cyclery also did their part and made Claire’s bike beyond sharp.
“Oh my gosh,” she marvels looking at her fancied-up ride, “That is so cool.”
The ride begins Saturday evening at 5:30 p.m. at the Hermosa Beach Pier goes to the Manhattan Beach and back to Hermosa.
Story produced for television by Gerri Shaftel Constant, CBS2/KCAL9 Medical Producer
To sign up for the ride, click here.
To follow Claire on Facebook, click here.
For more on Claire’s Place Foundation, click here.
For more about cystic fibrosis, click here.