Photo by Larissa Perroux
With her inspirational words and her goofy sense of humor, Claire Wineland became one of the most inspiring young adults on social media. From her near death experience at 13 to her motivating Ted Talks and Instagram Live streams, Claire touched thousands of hearts across the world. She was born with a rare and brutal degenerative illness called Cystic Fibrosis (otherwise known as CF). CF is caused by an abnormal gene which causes thick, sticky mucus to build up in lungs and other organs. The mucus clogs the airways and traps bacteria in the person’s body. This leads to infections and could eventually lead to respiratory failure. In the pancreas, the mucus prevents digestive enzymes that help the body break down food and take in nutrients. Although, Claire struggled with this illness, she knew to keep her head held high and show others to learn to accept the life they are given.
At only 11, she aspired to be just like Stephen Hawking, “I learned that he was like me. He didn’t have CF, but he had a horrendously frustrating disease, where his body was completely failing around him. And yet here he was as someone who has contributed something incredible to humanity. To society.”
Claire spent most of her life in the hospital, undergoing over 30 surgeries, but just two days after her 13th birthday, she emerged from a routine procedure with blood sepsis, a blood infection causing her lungs to fail. She recalls being awake for six hours and feeling herself slowly passing, “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.” With a 1% chance of survival, she was put on an oscillator. No one in medical history had ever been on an oscillator and survived, except Claire. For 16 days, Claire was in a coma and had a huge support system by her side when she woke up.
The experience prompted her to do more to help others with her condition. She realized not a lot of people with Cystic Fibrosis had the kind of support she did. All the money donated to Cystic Fibrosis goes to finding a cure which makes it very difficult for people already afflicted with CF to receive the help they need. So, she started The Claire’s Place Foundation, a non-profit organization dedicated to supporting individuals and families affected by Cystic Fibrosis. As she grew older, Claire realized she was becoming the person she aspired to be as a little girl.
At birth, Claire’s life expectancy was ten years, but then she turned 11, later celebrating her 16th birthday, then her 21st….As she grew older, her fear of death lessened. She wanted the world to understand there was no way around death, but whether your life is long or short, you should live it proudly. Therefore, she started a series of inspirational TedTalks when she was only 14. By the age of 20, she was featured on a YouTube series called “My Last Days” capturing Claire’s most tragic and transcendent moments, as when she snuck out of the hospital to go to a Bernie Sanders rally in Los Angeles. This documentary gained social media attention as more and more people around the world became inspired by Claire’s story. She also began to use YouTube to share “hospital rants” or descriptions of her daily experiences; in one particularly poignant video called “What it feels like to die,” she describes how she flatlined in an elevator.
On July 7, 2018, Claire uploaded a video on YouTube stating that she was approved for a lung transplant but needed to raise money. She started a GoFundMe with the goal of $225,000. In less than a month, people not only donated enough to reach the goal, but continued to contribute money for her recovery after surgery. The campaign ended after raising total of $267,877 in three months. “So many of you helped. I don’t even have a way to explain what you’ve done for me, what you’ve done for my family. I mean you’ve literally saved my life and taken such a huge weight off my shoulders and my family’s shoulders.”
On August 26, 2018, Claire Wineland suffered a stroke after her double lung transplant due to a blood clot. She was in a coma for a week before passing away on September 2nd. The next day, Claire’s Place Foundation posted details on Facebook, “Last night at 6:00 p.m. Claire Wineland, our inspirational founder, passed away. She was not in any pain and the medical staff said it was the most peaceful passing they had ever witnessed. She was surrounded by love and with her mother Melissa Yeager and father John Wineland; they saw her into this world for her first breath and were with her for her last.”
When the devastating news of Claire’s passing was shared with the public, thousands of people captivated by her kindness mourned. Her followers and loved ones got the opportunity to listen to Claire’s message and take something away from the courageous life she lived. With her incredibly warm heart, Claire was able to show people that they could do a lot of amazing things in their lives, no matter their circumstances. Wineland did so much more in her 21 years than anyone expected and kept generously giving to others, even after her death. Anyone who knew of Claire’s kindness was not surprised to hear she was also an organ donor. Soon after Claire passed, families would be receiving calls that they would finally receive their transplant.
If you are interested in donating or reading more about living with Cystic Fibrosis, click on the link for Claire’s organization.