On September 2nd, 2018, cystic fibrosis activist and foundation-owner Claire Wineland was taken off of life support after suffering from a massive stroke. She was 21 years old.

Claire Wineland was born to Melissa Nordquist Yeager and John Wineland on April 10th, 1997. She was diagnosed with cystic fibrosis, or CF, at birth, and given only a few years to live. In one of her YouTube videos from 2015, Claire described her early life with cystic fibrosis:

“When I was born, I had a life expectancy of 5 years old. And then, it moved to 10 years old. And then, it moved to 13 years old. And then, it moved to 18 years old. And now, it’s currently at 19 years old. And every single time that I get close to that point where I’m supposed to die, there’s a new technology that comes out, new medicine, new ways of treating cystic fibrosis. And then, presto, I live for another five years. But, really, at the end of the day, I can’t believe what the doctors say. But I also can’t believe it’s going to be okay.”

CF is a genetic and progressive disorder that causes the body to produce an excess of mucus. This excess affects the function of the lungs, as well as the digestive system. This can lead to infections, blockage, and total respiratory failure. CF is also progressive, meaning that the effects of the disease get worse the older the patient gets. Claire often described living with CF as though you’re trying to walk uphill while pushing a boulder. As time goes on, the boulder becomes heavier, and the hill gets steeper. Treatment is absolutely critical.  

Despite being sick her whole life, Wineland had a good childhood. Although her parents were divorced, they were both active in her life. She was able to attend school, despite being in and out of the hospital so much. She saw her hospital staff as family, learning new things from them and laughing along to jokes.

After almost dying and being put in a medically-induced coma at the age of 13, Claire and her family realized that the only reason they made it through such a hard time was because of the support that their friends offered. The more Wineland thought about her situation, the more she realized that there were so many others with CF in her exact situation without the support she had. After a lot of discussion, Claire started her foundation.

The Claire’s Place Foundation is an organization that aimed to provide emotional and financial support to families with loved ones suffering from cystic fibrosis. They provide grants to families, connections to emotional support groups, and work to educate communities about cystic fibrosis.

In addition to her foundation, Claire started her own Youtube channel known as The Clarity Project. Her goal for the channel was to normalize illnesses like cystic fibrosis, provoke discussions about life in hospitals and early deaths, offer advice to people on how to interact with terminally ill people, and hopefully offer support to those going through a situation similar to her own.

Claire’s message gained momentum, and soon she was traveling around the country, informing communities about living with CF, and the emotional strain that young people with terminal and genetic diseases go through. She was even given the opportunity to give a few TED Talks.

In early 2018, Claire admitted that she was going to apply for a double-lung transplant after her health took an intense decline. She made the list in late May, and got the notice on August 26th that the surgery was at go. The procedure took nine hours, and went extremely well. However, while in recovery, Claire suffered a stroke due to a blood clot that cut off circulation to her right brain, something that only happens to 3% of double-lung transplant patients in between surgery and hospital discharge. Claire was put into a medically induced coma, and remained in that state for her final week alive.

Laura McHolm, board chair for Claire’s Place, explained the events of Claire’s final week; “After a week of intensive care and various life saving procedures, it became clear that it was Claire’s time to go. She was not in any pain, and the medical staff said it was the most peaceful passing they had ever witnessed.” Claire’s parents were by her side as she took her final breath.

Even in death, Claire continues to save lives and help others. Her mother received an email from a family service specialist, stating that Claire’s right kidney was given to a 44 year old woman in San Diego, her left kidney was given to a 55 year old man in North Carolina, and her corneas and tissue were recovered, and could possibly help up to 50 others. The specialist told her that, “Claire’s gift is huge, I want your family to know that your daughter is a hero.”

Despite Claire’s passing, the Claire’s Place Foundation plans on continuing the financial and emotional support it has offered to those with CF for several years.

Claire’s final video left her fans with a haunting and important message: “Go enjoy your life. I mean that seriously. Go enjoy it, cause some people are fighting like hell for it.”