Claire Wineland was a smart, hopeful 21-year-old a student at Santa Monica College. As reported by USA Today –
Instead of flowers, Wineland’s family is asking for donations to be made to Claire’s foundation.
It was her greatest wish that her foundation would continue on with or without her,” said Melissa Yeager, Wineland’s mother, in an update on GoFundMe. “Knowing Claire, she was all about being of service to others and your donations will support her in that. A continuation of her legacy.
Claire Wineland had a ritual every time she checked in to the hospital room she’s occupied on and off since she was four: She rearranges the furniture and plasters the walls in butcher paper. Sometimes she paints bricks to make the room look like a loft.
Wineland has cystic fibrosis, a genetic disease that produces an overload of mucus in the body and affects most of her organs. It’s hard work just to stay alive: She did five hours of breathing treatments a day and takes nearly 50 medications. Her life expectancy? Midtwenties, she made it to 21. But Claire was blessed with a sharper mind, bigger heart and more sense of purpose than many adults.
You’re on this constant stop-start where you start living your life and then you have to get plucked out of it and go to the hospital for a few weeks, which makes it hard to have anything that’s grounded. Wineland says.
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Two days after her thirteenth birthday, Wineland had a near-death experience: After a routine surgery she got a blood infection and her lungs collapsed. For nearly six hours she was awake while dying. “I got this feeling of grief; I was sad for all of the things that I could have done and the person I could have become,” she says.
Wineland was put in a medically induced coma for three weeks, and after coming out of it, she had a huge support system around her. But she noticed many other sick kids and their families didn’t have as much help. She started Claire’s Place, a foundation to support people with CF and their families, including covering costly medical bills, rent, or breathing equipment. To date, she’s aided more than 100 people with CF. And on YouTube, she challenges stereotypes about terminal illness (see her millions-viewed videos “What It’s Like to Be in a Coma,” and “Dying 101”). She was recently approved for a lung transplant, a crucial surgery for young adults with her disease.
Everything I’m proud of comes from some of the darkest things in my life, Wineland says. My purpose is to help more people feel comfortable with their pain and realize that they have a lot of power and a lot to give regardless of whether their life seems normal or not.
Claire died yesterday after complications after her lung transplant surgery.
She was 21 years old.
Her foundation Claire’s Place continues on. It provides emotional and financial support to families living with cystic fibrosis
Claire’s Place Foundation, Inc. is a 501c3 non-profit organization providing support to children and families affected by cystic fibrosis (CF). Claire’s Place Foundation is named in honor of Claire Wineland, now a teenager, who has been living with CF her entire life. The foundation provides grants to families affected by CF, offering both emotional and financial support. A young author of bestseller “Every Breath I Take, Surviving and Thriving with Cystic Fibrosis,” Claire’s unique inspirational model for people living with this disease has led her to be a TEDx Speaker and receive multiple awards including FoxTeen Choice Awards 2015, Gloria Barron Prize for Young Heroes, Southbay Magazine’s“Top 10 South Bay Teen”, Looking Beyond LA’s “Soaring Spirit Award,” and winner of Los Angeles Business Journal’s “Small Nonprofit of the Year.” She has been featured on Inside Edition, The Dr. Oz Show, CNN, Huffington Post, ABC News, Cosmopolitan Magazine, People Magazine, Ladies’ Home Journal and many more. Claire’s Place Foundation is a way for Claire to give back with hope, strength, and joy and make meaning of what she has had to go through.
Photo Credit: Getty Images