About 30,000 people in the US have CF, a genetic disorder that affects the lungs, pancreas and other organs, according to the Cystic Fibrosis Foundation.
Claire Wineland, an online creator has sadly died at the age of 21.
Diagnosed with cystic fibrosis at birth, Wineland harnessed the power of the internet to spread her message, sharing details of her treatments and day-to-day living, as she lived a full life in spite of the condition. They saw her into this world for her first breath and were with her for her last.
Wineland's health took a turn for the worse in recent months, prompting the double lung transplant. Doctors performed an emergency brain surgery to remove the clot and immediately put her into a medically-induced coma. "Claire's gift is huge, I want your family to know that your daughter is a hero", her mother was told in an email, according to CNN.
Throughout her teens, Wineland's YouTube videos offered an intimate look at her life. "It's not like we walk around like dogs with our tails in between our legs all the time".
"Claire's corneas and tissue was recovered and she will be able to enhance the life of up to 50 people", a family services specialist wrote in the email. Claire created her own foundation, Claire's Place, which heightens "public awareness about Cystic Fibrosis and improve the quality of life for the families it affects by providing education, life skills, inspiration, and positive support, when she was just 13 years old".
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