08/31/2026
🦋 Please meet Charlotte Jo - but don't you dare call her by her real name unless you want to get this 4-year-old spun up like a tiny Kansas tornado! "Charley" is one of the strongest people you'll meet. Charley was born with an incredibly rare genetic disease, often called "the worst disease you've never heard of" and "butterfly disease" (because her skin is as fragile as a butterfly's wing).
Recessive Dystrophic Epidermolysis Bullosa (RDEB) is when children are born without the proteins that help hold the layers of their skin together. Because of this, even the slightest friction or everyday activities—being picked up, learning to walk, getting dressed, or simply giving a hug—can cause painful blisters and open wounds.
RDEB is much more than a skin disease. It can cause wounds inside the mouth and esophagus, making eating difficult, and can lead to chronic pain, infections, scarring, anemia, and an increased risk of aggressive skin cancer later in life. There is currently no cure, so every day is focused on managing symptoms, preventing complications, and making sure Charley is as comfortable as possible.
For Charley's family, RDEB is not something they face occasionally — it is part of every single day. Every day includes protecting her fragile skin while encouraging her to explore the world like any other little girl. Dressing changes can take hours and are often painful despite everything they do to make them easier. They must carefully plan every outing, every activity, and every milestone around keeping her safe, while still giving her the joyful childhood she deserves. The emotional and financial burden of specialized bandages, wound care supplies, medications, adaptive equipment, and travel for specialized medical care is immense.
🥒 Join us Saturday September 12th at Oakdale Park for our 3rd Annual "PADDLE BATTLE" pickleball tournament, presented by Be Assure. To register, scan the QR code in the flyer or visit:
https://app.pickleballden.com/external-tournament/6253729
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