“When I was born, my life expectancy was 10 years old. Then it moved to 15, 16, then it was 18, now it’s 20s. And because the life expectancy keeps getting pushed back, I keep realising I’m going to live longer and longer and longer, which is terrifying! I was so ready to die in a weird way and now all of a sudden, there’s like a life to live.”
20-year-old Claire Wineland’s refreshingly realistic approach to her chronic illness, cystic fibrosis, has been helping and inspiring families not to simply cope with the disease, but to actually live with it. Have a look:
When Claire was diagnosed with the illness, which causes an excess of mucus to build up in her body, she had a life expectancy of 10 years. But she’s used her illness to uplift others, explaining she’s made it her “life’s purpose to try and explain how it’s possible to be sick and still live a life that you’re proud of.”
At the age of 13, after surviving what she called a “near-death experience”, Claire started the Claire’s Place Foundation to alleviate the financial burden that comes with having to live with cystic fibrosis. To inspire other families, she created The Clairity Project – a space where she could vlog about the personal struggles of her life.
She’s even gone so far as travelling the world to move others through public speaking.
- Also read: A-Z OF COMMON CHILDHOOD AILMENTS
Claire credits her strength to her parents who have always supported her and helped her accept her illness.
This acceptance has encouraged her to live the best life she can, with her illness.
And while she hasn’t lived the most normal life, she explains that she hasn’t let her sickness hold her back from doing normal things as a teenager and now, as a young adult.
“People kind of simplify people who are sick. We act as if the only thing they think about is their health. Or the only thing they think about is death. When the truth of the matter is, that’s kind of the last thing on my mind. Like, I’m sitting there panicking over whether the text I just sent a dude that I like sounds way too, like, desperate. Or if I send the, like, devil face emoji, is that going to be too much too soon? I don’t know.”
With an upbeat attitude, Claire’s unfiltered experience continues to lift others and remind them that you can be sick and still live a good and full life. She certainly has.
"I get to travel the world and speak and have my own apartment in Venice. And I get to date. And I get to laugh and I get to go on adventures and run my own nonprofit and do exactly what I love doing. And none of that is in spite of being sick. It's because of it."
- Here's the scary reality behind having a child with a terminal disorder
- Down syndrome: avoiding the awkwardness
- Down syndrome won't keep me down: four friends open own pizza business!
Do you know of any similarly inspiring young children and adults doing their bit to change the world? Help us tell their stories by emailing to email@example.com.
Sign up to our weekly newsletter to receive Parent24 stories directly to your inbox.