Leah's Story, Year Two: Walking for EB in Union County
Last November, Ashley and Ricky Lynch did something they'd dreamed about since their daughter Leah was a baby: they hosted their first walk for EB. Leah is the only person in Union County, Florida living with Epidermolysis Bullosa (EB), and that first walk brought her community together to learn about EB, show up for Leah, and support debra of America.
This year, the Lynch family is doing it again. The second annual Hope In Her Footsteps: Leah's Walk for EB takes place on Saturday, November 7, 2026 at Mary C. Brown Public Library in Lake Butler, FL, and everyone is invited to walk alongside Leah, now 8, as she continues to shine a light on 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.
We caught up with Ashley and Ricky to hear what the past year has meant to their family and what they hope this year's walk will bring.
Q: This is the second annual walk — what did last year's event mean to your family, and what made you want to do it again?
We wanted to do something that celebrated Leah's strength and resilience while also bringing our community together to learn about EB and get to know Leah (she's the only person in our county living with EB). We wanted to spread awareness and also support the EB community. Last year's walk meant more to our family than we could put into words. Seeing so many people show up for Leah whether they walked alongside us, guided us through fundraising, and sponsored or donated, it made her feel so loved and supported. We are filled with so much gratitude. Leah loved seeing everyone come together for her and was excited to see how much we raised for debra of America, knowing it helps others like herself.
With that being said, last year encouraged us to do it again. We want to spread more awareness and reach even more people who have never heard of EB, raise more funds for debra of America, and continue making this walk something our family and community can look forward to every year. Most of all, we want to keep honoring Leah and her strength and resilience while giving back to the EB community through debra of America who helps families like ours and funds research.
Q: What has changed for Leah, or for your family, since the first walk?
For us, we wanted to advocate more for Leah and the EB community and do something like this for years but we didn't know where to start and it would feel too overwhelming. Organizing the first walk pushed us outside of our comfort zone and we feel even more encouraged to do it again this year.
For Leah, just watching her continue to grow into the beautiful person she is. She's becoming more aware of how her story can help others with EB and sharing her experience can help others understand EB. Watching our community come together for Leah showed us all just how important awareness and support is.
Q: What's one thing you hope people take away from this year's event that they might not have understood before?
This year, we hope people leave the walk with a deeper understanding that EB is more than just a skin condition. The skin may be what people notice at first but EB can affect not only outside the body but the inside as well. There are challenges that come with EB every single day and it takes strength and resilience, not only from the person living with it, but from their family too.
At the same time, Leah is so much more than her diagnosis. EB is a part of her life but it is not all of who she is. She's loving, funny, caring, strong, creative, and full of personality. We hope people leave the walk with a better understanding of what living with EB actually looks like and all that it entails but also get to know Leah, the little girl behind the awareness walk, and ALL the things that make her who SHE is.
Q: Last year you spoke about being the only family in Union County navigating EB. Has the walk connected you with anyone new — locally or in the wider EB Community?
Last year's walk gave us the opportunity to reconnect with the Berisha family, who live in a nearby county and have a son with EB. We actually met Mark Berisha when Leah was born. He graciously came to the NICU at UF Health Shands to meet us and Leah, brought EB wound care supplies, helped us navigate the NICU days, and shared his family's experience with EB with us during a difficult time when we were just learning Leah's diagnosis. We didn't feel so alone after his visit. Knowing their and their son's story gave us so much hope for our own. With that being said, having the Berisha family join us last year's walk was very special to us. We hope to see them again this year.
For Leah, having another child with EB there meant so much. It reminded her that even though EB is rare, she isn't alone. And for us as parents, connecting with families who understand the realities of EB is refreshing. Leah also enjoyed seeing her dermatologist, Dr. Lavery, and her nurses with the Gainesville EB Clinic outside of the doctor's office, and of course family, friends, and our community.
We're grateful for the connections made at last year's walk and hope those continue to grow. We really hope to connect with more EB families and hope they can join us for Leah's walk.
Q: What would you say to another family who just received an EB diagnosis and feels alone?
That they are not alone. An EB diagnosis feels overwhelming when you're facing so many unknowns, especially if you haven't heard of EB and don't know what the future will look like. We remember those initial feelings in the NICU and how much fear came with not knowing what life would look like for Leah. While EB is rare, fortunately, there is a supportive community of people who know exactly what you're going through. There are families out there who have been where you are, who will listen, understand, and offer advice when needed. Organizations like debra of America and the EB community on Facebook have been great resources for our family. Most importantly, EB will only be a part of your child's story, not their whole story. You may go through so many feelings and emotions but take it one day at a time. Just know there is hope and you don't have to go through it alone.
Q: Leah is a year older now — what's she into these days? What makes her light up?
Leah is 8 now and she's into art of all kinds. Painting, sketching, coloring, crafting; she loves it all! She also enjoys swimming, the check, arcades, and playing video games. Anything that lets her be creative or just have fun is what makes her light up. One of the biggest things we've learned since her diagnosis is we spent so much time in the beginning worrying about all the things EB might take from her but she has shown us again and again how much life, joy, and love she has to give and how strong and resilient she truly is.
debra of America is so grateful to the Lynch family for their hard work and dedication in hosting this very special event for its second year!