Deanna’s EB Butterfly Walk: From Adelaide to Melbourne

Many in the DEBRA Australia community may know Deanna Pope as the incredible driving force behind Bubbles and Butterflies, and now she’s bringing that same passion to her biggest challenge yet – the EB Butterfly Walk – a 750km journey from Melbourne to Adelaide between 18 March and 8 April.

Despite Epidermolysis Bullosa (EB) shaping her life, Deanna could not understand how so few truly knew what it was like living with the condition, and how profoundly it affects families every day. Watching a news story about three brothers taking on the enormous challenge of rowing from Africa to Australia for charity stayed with her.

It sparked a question: what would it take to truly capture attention and start conversations about EB? That question marked the beginning of her EB Butterfly Walk challenge.

Deanna’s EB story

Deanna was diagnosed with EB Simplex as a child, alongside other members of her family. Blistering, pain, and unpredictability shaped much of her early life, yet the resilience shown by her loved ones, including her beloved late brother Darryn, whose memory continues to motivate her, has always been a guiding force.

Today, Deanna also recognises that same resilience in the children within her family who share the condition. Every day, they navigate EB together, and every day, they continue to chase their goals with courage and determination.

Deanna’s connection to DEBRA Australia began early, as it was the first organisation she encountered following her EB diagnosis. Witnessing the support that DEBRA Australia provides to families inspired her to create the Bubbles and Butterflies Luncheon, and to serve as a DEBRA Australia Ambassador, committee member and board member.

Living with EB herself, the walk will be an enormous undertaking. But as Deanna says, it is still nothing compared to what EB families face. “This challenge represents the endurance, resilience and strength that EB families show daily. I am proudly doing it for them,” she shares.

Deanna hopes that her journey will raise awareness, bring communities together and raise $50,000 to support families living with EB.

Show your support for Deanna

• Following and sharing @ebbutterflywalk on Instagram

• Joining her for part of the journey, or simply stopping by to cheer her on, if she’s passing through your town

• Donating to her challenge if you’re able to, or inviting friends, family, and colleagues to contribute

• Attending one of her fundraiser evenings in Ballarat (Friday, 20 March) or Adelaide (Wednesday, 8 April)