Seventeen-year-old Claire Wineland says she "still loves life and is very happy"
Claire Wineland acts and looks like a happy and beautiful 17-year-old with a bright future. But she has a challenging road ahead of her.
The Los Angeles high school senior has cystic fibrosis, a life-threatening genetic condition that causes massive fluid buildup in the lungs. For CF patients, every breath can be a struggle, and many don’t live past young adulthood.
But Claire is doing everything in her power to make the most of her life now.
“It’s very hard to do what you’re supposed to do to stay alive with this disease and still have the energy left to want to stay alive,” she tells PEOPLE.
“How do you make it so you don’t just feel like you’re a hamster running in the wheel just keeping yourself going? You need to have substance in your life.”
Wineland has had 35 surgeries over the course of her life, spends about four hours a day doing different breathing treatments and goes into the hospital for about two weeks every two to three months due to complications.
Astonishingly, she is still able to find humor in even the darkest times.
When a friend came to visit her at the hospital, he kept telling her how badly he felt for her, she recalls.
“I just want to live in the moment,” she says. “Why does it have to be so miserable?” So she decided she wanted to show people the truth of her progressive and incurable illness, but with humor and hard-earned wisdom.
“I love YouTube, so I started posting videos about the disease,” she says. “The reaction has been so wonderful. I love seeing that people are getting that my life is different but it’s not terrible.”
On it, she jokes about how in the hospital, you can get room service and unlimited Wi-Fi, you don’t have to make your own bed, and there’s a constant supply of junk food.
“I want to show people that the hospital does have its moments,” Claire says. “The hospital is just a place, and even though it does have fluorescent lighting and white walls, it doesn’t have to be a miserable experience.”
When Claire was 13, her illness took a frightening turn and she was hospitalized and put in a medically included coma for three weeks. Doctors told her parents she had a 1 percent chance of surviving.
“When I came out of it, it was astounding how many people had been there supporting my parents the entire time,” she says.
Claire says she realized how many families don’t have enough money for one parent to stay home to care for their sick child, like her mom, Melissa Nordquist, did. Her father, John Wineland, is a business owner.
So she decided to help others and founded Claire’s Place Foundation, a nonprofit organization that provides support to children and families affected by the disease.
So far the organization has helped 12 families cover their rent and car payments, and allowed them to spend more time with their children in the hospital.
Despite the grim prognosis her doctors have given her, Claire is able to live in the moment.
“A lot of people say when you get a short life span you want to go out and do all of this crazy stuff like go bungee jumping and travel to exotic places,” she says. “But you just want to live. You start to realize that the mundane stuff is really beautiful, and you want to experience the great stuff that everyone else gets to experience.”
For Claire, that means spending time with her family – including her sister and best pal Ellie, 10 – as well as finishing high school and eventually going to college.
She has it all mapped out: She wants to study anthropology, sociology and psychology at the University of California, Berkeley.
“I love the idea of college, but I first need to figure out how to transition to being an adult because we honestly never thought I would make it to this point,” she says. “But I’ve survived and come this far. I can keep on going.”