Leah’s Story: Shining a Light on EB in Union County
7-year-old Leah is the only person in Union County, Florida living with Epidermolysis Bullosa (EB). From the moment she was diagnosed, her parents, Ashley and Ricky, knew that they needed to be her fiercest advocates.
On Saturday, November 8, 2025, they’re taking a brave step forward with their first-ever event, Hope In Her Footsteps: Leah’s Walk for EB, at the Union County Public Library in Lake Butler, Florida. Please join the Lynch family and debra of America in celebrating Leah’s courage, spreading awareness, and supporting everyone living with EB.
Registration is free. RSVP HERE >
Can’t make it in person? You can honor Leah by making a donation to debra of America here.
Q: What inspired you to create this walk for Leah?
Ashley & Ricky: We organized this walk in honor of Leah to celebrate her strength, her joy, and the incredible resilience she shows every day living with Recessive Dystrophic Epidermolysis Bullosa. Despite the daily pain and challenges, she continues to shine with a light that truly inspires everyone around her.
We’ve wanted to organize a walk since she was a baby but since we’ve never hosted one before, it’s always felt a little overwhelming, but we’ve been welcomed with support and encouragement from friends, family, and debra of America so we decided it was time to take action.
Our hope is to bring our community together to learn about EB, feel connected to Leah’s story, and come together in support and hope. We also felt a strong need to do more to spread awareness and also help raise funds for debra of America, an incredible organization that has done so much for families like ours. This walk is our way of showing love for Leah, helping others better understand EB, and to support the EB community and debra of America.
Q: What do you want your community to understand about EB and Leah’s journey?
Ashley & Ricky: One of our biggest goals is helping others understand not just what EB is but what it truly means to live with it; the daily routines, challenges, and the strength it takes.
Leah has been through more than any child should have to go through, yet she faces each day with incredible courage and resilience. And while it’s important to share the challenges of EB to educate and spread awareness, we also hope that people see her for who she truly is and that her diagnosis of EB doesn’t define her. Despite everything, she is an amazing, caring, and sweet little girl whose spirit and happiness inspire us every single day.
Often, rare diseases like EB are “invisible” until it touches your life directly. We hope to change that and for us, starting in our community. While there isn’t a cure yet, we know with more awareness and support, one day there will be a cure for Epidermolysis Bullosa.
Q: Leah is the only person in Union County living with EB. So, what does it mean for your family to create awareness where none existed?
Ashley & Ricky: Leah is the only person in Union County living with EB and when she was diagnosed, we quickly learned that because it is rare there was little to no awareness. We knew we had to educate ourselves and be her biggest advocate. Raising awareness is essential, not just for her care, but for her future. We want our hospital to be prepared, our schools to be informed, and our community to feel connected to her story.
When we’re out in public people often ask “what happened to her” or even try to guess things like a car accident, burns, or even “a lost fight with a mosquito” (which is Leah’s favorite joke now, haha); while it is sometimes tough, we see these moments as an opportunity to educate others on EB. Every conversation we have plants a seed and Leah wants people to know and understand. EB affects everything, even mental health, so our hope is that Leah grows up in a community where she doesn’t feel “different” because people will already know her story.
Raising awareness in a community where little to none existed before gives our family hope. Leah’s story is being heard, and we pray this walk becomes an annual walk that continues to spread awareness and serves as a reminder of the strength in our small community. We are filled with gratitude, and it means the world to us to see people showing up, asking questions, and planning to walk alongside us and Leah for ‘Hope in Her Footsteps: Leah’s Walk for EB Awareness’. 🦋🫶🏼
debra of America is so grateful to the Lynch family for their hard work and dedication in creating this very special event!
