When Carson was born in 2007, his parents, Kristy and David, were prepared for the long, sleepless nights and the responsibility of being new parents. What they weren’t ready for was a diagnosis that would change their lives forever.
Carson was born with epidermolysis bullosa (EB), a rare condition that makes skin extremely fragile so that even the lightest touches can cause blisters and trauma. Carson has been a patient at Cincinnati Children’s since he was born. He sees experts in our Epidermolysis Bullosa Center for continued care. People with EB are often compared to butterflies, because their skin is as fragile as butterfly wings.
Because of the fragility of Carson’s skin, his parents had to learn how to properly protect it with special medicines and bandages that need to be changed daily. The entire process lasts hours, and causes Carson pain.
Kristy and David were eager to bring more awareness about EB and to help support EB research at Cincinnati Children’s, so they started the Walk for EB in 2008 and the fundraiser has grown every year.
“We started the walk to raise awareness and support research,” Kristy says. “We want to be able to help more kids like Carson, and the way to do that is to support the research that will lead to better treatments and cures.”
Each year, Kristy and her family form a committee to plan the event. They ask close family to be a part of the committee, and everyone gets their friends and coworkers to help in other ways. The results have been overwhelming, and the family has raised more than $135,000 to support EB research.
“The most important thing in holding an event like this is to get help,” Kristy says. “You can’t do it alone and there are a lot of people who want to help when you have a child with a serious condition like EB, and this is one way they can be involved and really make a difference.”
The Walk for EB is typically held in May at Miami Whitewater, with an average of 300-500 participants each year. More information.
If you are interested in holding a fundraising event, you can be a part of our Giving Hope Program. Contact Jane Livingston at email@example.com or 513-636-5686 for more information.