In October, my dad and I are taking on the challenge of a lifetime — an 8-day trek to the summit of Mount Kilimanjaro. We’re doing it to raise money for DEBRA UK, in the hope that one day, there might be relief — or even a cure — for “the worst disease you’ve never heard of.” A cure that could give my daughter, Jasmine, a chance to live free from pain.
Most people who know us know Jasmine who was born with Recessive Dystrophic Epidermolysis Bullosa (RDEB). It’s an unimaginably cruel and rare condition that affects her entire body, leaving her in excruciating pain every single day.
Jasmine’s form of EB means that the “glue” that holds the layers of her skin together is missing. That means her skin can blister, shear off, or tear with the slightest touch. Her body is bandaged from neck to her toes, every single day. Her wounds are often compared to third-degree burns.
Every other day, we face 4–5 hours of dressing changes — hours filled with pain, tears, and bravery. It’s hard to describe what it’s like watching your child go through that — knowing you can’t take away their pain. But this is Jasmine’s life. This is our reality.
And yet, somehow, she still smiles. She still laughs. She still hopes.
But the truth is, for Jasmine, RDEB doesn’t stop at the skin. It brings with it a host of other battles — osteoporosis, partial kidney failure, feeding tubes, regular blood transfusions, throat procedures, and the invisible scars of mental health struggles. Any one of these would be more than enough for most people. Jasmine faces them all, every single day. She’s 13 years old — and she’s endured more pain in her short life than most of us will in a lifetime. She shouldn’t have to.
No child should.
That’s why my dad and I are doing this — leaving our families behind (no small thing when you have a child with EB) and taking on this mountain — to raise as much money as we can for DEBRA UK so that they can continue their unwavering support for families like ours, fund vital research, to push for treatments, and one day, a cure.
We’re doing it for Jasmine. For every child and family living this nightmare. For a future where pain isn’t a daily companion.
If you can, please support us. Donate, share our story, help us spread awareness — because the more people who know about EB, the harder it is to ignore.
Thank you, from the bottom of our hearts, for taking the time to read our story. Please share it far and wide.
Together, we can make sure that one day, children like Jasmine can simply live.
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