Claire Wineland, who was a beloved activist, Youtube star, author, and inspirational speaker, had passed away on Sunday, September 2nd.
Wineland has been battling cystic fibrosis since birth, and at the age of 13 she experienced lung failure. Having been put in a medically-induced coma, her medical staff estimated that she only had 1% chance of survival. Regardless, she awoke from that coma.
Cystic fibrosis is a disease that is diagnosed since birth. It causes an overflow
of mucus, bodily fluids, and sweat. This overflow contributes to digestive and respiratory issues, affecting the pancreas and lungs with possible lung failure. Those affected by the disease experience symptoms of chest pain, chronic coughing, shortness of breath, fatigue, weight loss, and acute bronchitis. Patients can receive respiratory aids, and eventually a lung-transplant if they are approved for this procedure.
There are 300,000 people in the United States alone that are diagnosed with this cystic fibrosis. This disease is yet to receive a cure.
One-fourth of her lifetime was spent under hospital care due to CF. Clair became really close to her medical staff, considering them family. She made sure to make her room at the hospital as comfortable as possible, so that she could feel right at home.
When she was 13, she founded the Claire’s Place Foundation, a non-profit for people just like Claire. This foundation offers financial and emotional support to families of those who are affected with CF.
Claire was an motivational speaker. In 2017, she spoke at TEDx Talk wonderfully titled “Don’t wait to be healed to start saving humanity”. She was well known for talking about normalizing death on a social media platform and making inspirational Youtube videos, where she talked about death, what if feels like to die, and her life expectancy. She touched on tough topics with charisma, ease, and open-mindedness.
Originally ruling out the option of a lung transplant, she changed her mind when the steady dwindle of her health was becoming overwhelming and making it difficult to go about her everyday life.
She realized that she had so much left to do and give, and decided that she would put herself on the list for a double-lung transplant. “I’m not getting these lungs just to be healthy, I don’t care about that. I’m getting these lungs so that I can do something for everyone. So that I can give something that the world needs. I don’t know, so that I can help people”, Claire tearfully told us in one of her recent videos. Although she was embarrassed to ask for financial help through GoFundMe, Claire was willing to deal with anything if it meant that she could live and continue giving.
Although there had been complications along the way, she was approved for the transplant. Claire had to be in a state critical enough, but strong enough to withstand the procedure.
The nine-hour double-lung transplant was successful. However, within a short amount of time, Claire suffered a massive stroke due to a blood clot that was blocking blood flow to her brain’s right side. Several emergency procedures were done in order to save her life, but she did not wake after one week of her medically-induced coma.
Due to the severity of Claire’s stroke and her advance directive, (a statement written by a person to ensure that their wishes are kept and fulfilled if they are unable to communicate with their doctor) it was evident that it was Claire’s time to go. On Sunday evening, she was taken off of life-support.
Claire’s death was very peaceful, as it had been the most peaceful passing that the medical staff has ever seen. Claire’s parents were by her side in her last moments, as they had been there in her first moments too.
Claire Wineland had been working with Film producer and Oscar winner Nicholas Reed to put together an documentary. The untitled documentary will be complete in November. Proceeds of the film will go toward the Claire’s Place Foundation.
Considering her life expectancy, Claire anticipated an early departure. Her supporters understood the circumstances, but there was so much life and spirit in her that her absence feels entirely surreal. She was a radiant individual; a hero that this world needed. Clair Wineland was truly one of a kind.
Alma Tovar
Features Editor
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