- Rachel Buyle was born with dystrophic epidermolysis bullosa, a rare genetic condition that leaves her skin extremely fragile and vulnerable to painful wounds
- After years of dealing with skin cancer, Rachel had her left arm amputated below the elbow in June 2025 to prevent the cancer from spreading
- Now Rachel is fundraising for a tracked power wheelchair to help maintain her independence
Here Rachel Buyle, 36 shares her own story in her own words.
Watching the waves lap at the shore, I breathed in the salty air.
‘Go on!’ I cried to my dogs Jetson, three, and five-month-old Basil, beaming as they raced down the sand alongside my husband, Stephen, 35.
It was June this year and I was desperate to join them, but my wheelchair can’t navigate soft sand.
Born with dystrophic epidermolysis bullosa (DEB), a genetic condition that causes my skin to blister and tear easily, I’m reliant on a wheelchair for longer trips.
My skin is as fragile as butterfly wings, and heat, rubbing, or even a small bump can cause wounds.
I was diagnosed the day after I was born.
When my mum Susan, then 26, and dad Dean, 31, welcomed me in April 1990, doctors noticed my skin tearing as they towelled me dry.
‘She needs specialist care,’ they told Mum, explaining I had DEB.
My older sister Julie, then 18 months, had clear skin like Mum and Dad.
‘What will this mean for her life?’ Mum worried, as doctors explained that even everyday movements, like eating and sleeping, could damage my skin.
I was transferred to a specialist hospital where Mum learned how to dress my wounds and fit nappies without causing chafing.
I was fed through a tube because the skin around my mouth tore when I tried to drink milk. After a month, I came home and my parents dressed my wounds with bandages three times a week.
But as I grew up, Mum and Dad never wrapped me in cottonwool, encouraging me to do everything Julie did.
I also had ongoing physiotherapy and occupational therapy.
I never let DEB stop me enjoying life. I played on the trampoline, swam in the pool and rode my bike.
When I started primary school, aged five, a nurse explained my condition to the other children, and they were understanding.
But strangers would stare or fire off questions.
‘What happened to you?’ they’d ask.
‘I was born with a skin disorder,’ I’d explain.
Most were curious, not cruel, but some responded with pity. ‘You poor thing,’ they’d say.
I didn’t feel sorry for myself – so why did they?
After school, I gained my teaching qualification and got work as a substitute teacher at a special education school.
In May 2022, I reconnected with an old school friend, Stephen, then 32, on social media.
I’d had a crush on him for years, so when he asked me out, of course I said yes!
Only took you 15 years! I teased over text.
We agreed to meet at a park for a bike ride, and talked for hours. Soon, we were dating, and the following year we moved in together.
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In May 2023, my service dog Jetson joined our family, helping me pick up items around the house – like my water bottle, my medication and his lead – saving me causing a friction wound.
Jetson became my shadow, always by my side to help.
In December 2023, I noticed Jetson running around the house with something in his mouth.
‘Drop it,’ I cried.
He placed a small box at my feet. Inside was a gorgeous sparkling ring.
Just then, Stephen walked in. ‘I was going to plan a whole event. But I guess I’m asking you now!’ he chuckled.
READ MORE: My bub was born without skin
He couldn’t believe his surprise was ruined by my cheeky pup. But to me, the proposal was perfect.
‘Yes, I will marry you!’ I cried.
Sadly, by then Dad had passed, aged 53, after a long battle with ALS – a motor neuron disease. But my family and friends were by my side as I said ‘I do’ in December 2024.
I felt like a princess in a beautiful light-blue gown.
Stephen and I promised to care for each other, in sickness and in health – something we’d already done for years.
People with DEB often face an increased risk of cancer because of ongoing skin damage – and by then I’d already spent a decade dealing with cancerous cells forming on my left hand.
I’d had surgery several times to sort it, but each op was incredibly painful.
In October 2024, Jetson alerted me to something wrong on my left wrist.
My GP confirmed cancer had returned for the sixth time. Surgery was an option, but I’d already made up my mind.
‘I want to amputate,’ I said.
With Stephen by my side, I went into theatre in June 2025 without fear.
I had my left arm amputated below the elbow to prevent the cancer spreading.
Recovery was easier than I’d expected and soon I was back at work.
Navigating my manual wheelchair was harder. So my family is fundraising for a new electric wheelchair with tracks instead of wheels. It will enable me to travel over mud, dirt, gravel, grass, and sand.
‘I’ll be able to drive down to the beach,’ I told Stephen.
It’ll also allow me to join my students during recess, as I’ll be able to safely navigate the playground.
‘You deserve it,’ Mum, 62, assures me.
I’ve connected with others who have DEB in online support groups, and I know that even with this diagnosis you can live a full life.
I still spend six hours a day, three days a week, wrapping my legs, arms, torso and chest to protect my skin, but I can drive a modified car, and I even went skydiving last year!
Stephen is my rock. He tells me how much he loves my independence, and my resilience.
Together, we’re building a life full of adventure.
To help visit gofundme.com/f/keep-rachel-moving-with-a-power-wheelchair
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