When Claire Wineland was 13 years old, Cystic Fibrosis (a progressive genetic condition) caused her lungs to fail. She went into a medically induced coma for 16 days and doctors gave her a 1% chance of survival. Over those 16 days, her family saw an incredible outpouring of support from their community – people arranged for support services to visit them in the hospital, helped pay the family’s bills, anything and everything they could do to ensure Claire’s parents could stay by her bedside throughout the ordeal.
When Claire came out of her coma and heard about her parents’ experiences over those 16 days, she had a profound realization – when a child is sick, especially with Cystic Fibrosis, nothing matters more to them and their family than being able to be together… but often that requires a lot of love and support from others. She knew there were other children and families facing the same challenges as hers, but without the same supportive community. So she created Claire’s Place Foundation, an organization that supports all children living with Cystic Fibrosis and their families.
Cystic fibrosis is a progressive, genetic disease that causes persistent lung infections and limits the ability to breathe over time. In people with Cystic Fibrosis, a defective gene causes a thick, buildup of mucus in the lungs, pancreas and other organs. In the lungs, the mucus clogs the airways and traps bacteria leading to infections, extensive lung damage and eventually, respiratory failure. While advances in treatments over the last few decades allows patients to live longer than before, there is still no cure and many young patients’ lives are cut short.
In the US, more than 30,000 people are currently living with cystic fibrosis and worldwide, the number of diagnosed cases is 70,000, with approximately 1,000 new cases diagnosed each year (most in children under the age of 2).
Cystic Fibrosis requires daily treatments and frequent hospitalizations. It can be expensive for parents who want to stay with their children to spend time away from work and stay in a hotel or other temporary lodging.
And because people living with Cystic Fibrosis are especially susceptible to bacterial lung infections, and each is exposed to different pathogens, meeting one another in person can be incredibly dangerous. This means children living with Cystic Fibrosis and their families are isolated from others who know what they’re experiencing. They can’t even meet one another to share their experiences or guide families with newly diagnosed children through the overwhelming process of seeking medical care.
Claire’s Place Foundation recognizes the need for building supportive communities for families affected by Cystic Fibrosis, as well as the unique challenges to doing this. Through their Support Families Program, they have several families standing by as registered Support Families for newly diagnosed or isolated families looking for support. Parent volunteers provide Families seeking assistance with support and information on how to work through the treatment and care process. These volunteers connect with families via email, phone, and video calls. This matching service ensures that every family that wants it has support.
The Extended Hospital Stay Grant Program addresses the financial stress families face when children with cystic fibrosis have extended stays in the hospital, often in a city far from home. Grants can be used to help pay mortgage, rent, utilities, or any other basic necessities the family has trouble affording while their child is in the hospital for an extended stay.
Claire is also committed to educating the public about Cystic Fibrosis and its effects on children and their families. At the age of just 19 she is an accomplished speaker and has also launched “CF University”, an online resource for children who want to learn more about their disease. It provides everything from definitions of medical terminology to how to advocate for oneself at doctor’s visits.
To date, Claire’s Place Foundation has provided much needed financial assistance to 26 families through their grants program. Claire has reached tens of thousands of children and their families with education and support programs.
Claire will use funding and support from World of Children to scale up her Extended Hospital Stay Grant Program, allowing her organization to significantly increase the number of children and families served.
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