In the world of insurance, we meticulously assess and manage risk, preparing for every conceivable challenge. But some journeys transcend policy documents, instead being etched in sheer grit, personal purpose, and extraordinary physical endurance.
Deanna Pope is currently undertaking one such journey: a 750-kilometer trek from Melbourne to Adelaide. While the monumental distance alone is enough to command respect, the reality behind it is even more profound. Deanna is navigating every single kilometer while living with Epidermolysis bullosa simplex (EBS), a rare genetic skin condition that makes her skin fragile, prone to blistering, and incredibly painful. This isn’t just a walk; it’s a profound feat of resilience that redefines what it means to push through the “impossible” and highlights the powerful connection between human spirit and purposeful action.
Deanna’s Deepest Motivation
We had the privilege of sitting down with Deanna to understand the heartbeat behind the EB Butterfly Walk. Her answers provide a poignant insight into her motivation.
McKenzie Ross: For those who may not have heard of Epidermolysis Bullosa (EB) before, how would you describe the condition and how it affects your daily life?
Deanna: Epidermolysis Bullosa (EB) Simplex is a rare genetic condition that makes my skin extremely fragile. Everyday friction, heat or pressure can cause painful blistering, particularly on my feet and hands.
It means I need to constantly manage my skin, pace physical activity and plan carefully to avoid flare-ups. Living with EB has shaped my resilience and is a big part of why I’m committed to raising awareness and support for EB families.
McKenzie Ross: Looking at your itinerary, you are often covering nearly 40km in a single day. How does EB change the physical reality of that kind of distance compared to a typical trekker?
Deanna: For most trekkers, a 40 km day is mainly an endurance challenge. With EB Simplex, the biggest issue is skin fragility. Constant friction and heat can cause painful blistering, especially on the feet, making every step progressively harder.
It means I have to carefully manage pacing, taping, footwear and recovery. The distance isn’t just physically tiring — it’s a daily balance between pushing forward and protecting my skin so I can keep going.
McKenzie Ross: You are undertaking this challenge to raise funds and awareness for DEBRA Australia. What is the most important thing you want people to understand about families living with EB?
Deanna: The most important thing I want people to understand is that EB is not just a medical condition — it affects every part of life for the individuals and families living with it.
Behind the visible wounds and fragile skin is constant planning, resilience and emotional strength. Simple things many of us take for granted can be exhausting or painful.
Through this walk, I hope people see the courage of EB families and understand why ongoing support, awareness and funding for care and research through DEBRA Australia is so important.
McKenzie Ross: Finally, what is your message to others living with EB who are watching you take these thousands of steps? What do you want them to remember when they are facing their own difficult journey?
Deanna: My message is that you are stronger than you think, even on the days when everything feels overwhelming. Living with EB requires courage, patience and determination that many people will never fully understand — and that strength deserves to be recognised.
I want you to remember that you are not alone. There is a whole community walking beside you in spirit, and people who genuinely care about making life better for those living with EB.
If this walk shows anything, I hope it shows that even small steps — taken slowly, carefully and with heart — can create awareness, hope and real change.
Thank you again for support of our walk and DEBRA Australia.
The Unseen Challenge: A Reality Breakdown
To truly grasp the magnitude of Deanna’s journey, it helps to break down the sheer physical and mental effort involved:
-
- The Distance: 750km from the MCG to Adelaide Rundle Mall.
- The Pace: Across 19 active walking days, Deanna is averaging nearly 40km per day.
- The Physical Toll: For someone with EB, friction is the constant enemy; every step requires meticulous skin care and mental toughness to manage blistering.
- The Timeline: A 22-day mission starting March 18 and concluding April 8.
McKenzie Ross Shared Values
At McKenzie Ross, our role extends beyond delivering exceptional insurance solutions; we are deeply committed to being a partner to our community. We believe in fostering resilience, supporting those who embody strength, and making a tangible difference.
This ethos is why we are incredibly proud to back Deanna Pope on her extraordinary journey. We have officially dedicated March 27th—the leg of her walk from Dimboola to Nhill—as McKenzie Ross Day. On this day, our team will be closely following her progress, drawing inspiration from her dedication, and celebrating the shared values of toughness, care, and community support that she exemplifies with every single step.
Double Your Impact: Join Us in Supporting Deanna and DEBRA Australia
Deanna’s courage is inspiring, and her mission to raise funds and awareness for DEBRA Australia is critically important. We invite our clients, partners, and wider network to contribute to this vital cause.
To amplify the impact of your generosity, McKenzie Ross will match all donations made by our network, dollar-for-dollar. Our commitment: We will match your contribution up to a total of $1,000.
How to make your donation count twice and directly support families living with EB:
-
- Visit the Official Donation Page: Click here to donate to Deanna’s EB Butterfly Walk
- When making your donation, please ensure you include the reference “MKR” in the designated message section. This is crucial for us to track your contribution and apply our matching funds.
- Witness the Impact: By referencing “MKR,” you’re not just donating; you’re doubling your support for DEBRA Australia, helping to provide essential resources, research, and care for individuals and families affected by Epidermolysis Bullosa.
We eagerly anticipate seeing Deanna complete this remarkable journey and encourage everyone to follow her progress and offer their support. Together, we can make a significant difference.
Follow Deanna’s journey on her Instagram Page: @ebbutterflywalk
Learn More & Support
To understand more about the condition and the incredible work being done to support the EB community, please explore the following resources:
-
- DEBRA Australia: www.debra.org.au
- What is EB?: Learn about the different types of Epidermolysis Bullosa
