August 2026
Not everyone living with paralysis sustained their injury through an accident. Spinal cord injury can be caused by diseases and illness. In Kayleigh’s case, she has von Hippel-Lindau (VHL) disease. This rare genetic condition causes tumours and cysts to develop throughout the body. One of these tumours grew on her spinal cord, damaging it at the C1-C4 level.
Kayleigh was 23 and studying animation at university when her symptoms began. Being a self-proclaimed Disney superfan she was enjoying her course, but it was interrupted by numbness and tingling in her right hand. She initially thought it was a trapped nerve or wrist sprain from drawing, but after seeking medical advice she was referred for an MRI. A tumour was found growing on Kayleigh’s spinal cord, wrapped in blood vessels, confirming that she had VHL.
Although receiving a diagnosis helped Kayleigh understand her condition, accepting her disability felt much harder. In the early days she struggled with her physical limitations and mobility issues, as well as bladder control.
“I had to come to terms with how my injury changed my body. Von Hippel-Lindau is an invisible condition, it affects me in ways you can’t see. On my left side I have movement but no sensation, and the opposite on the right side of my body – I want to move my arm, but it’s like a dead weight!
“As well as this, I have full sensation in my bladder but no control of it. I can feel the spasms, almost like being pinched. I can only pee by using a catheter, but I wish there was something a bit more dignified.
While she believes a cure for paralysis is a long way off, Kayleigh is full of hope for the future. She understands that technology will innovate ways to restore function after SCI. By the time her daughter is her age, Kayleigh hopes, there will be advances in research that will help make life easier.
“I reckon there will be a cure. It may come around when our children or grandchildren are about, but I hope there will be things that make life easier.
“It’s not just me I worry about, it’s other people too. Within a split second, you can become disabled. I want to raise awareness for other people who have no clue what it’s like living with paralysis.”
Now, Kayleigh volunteers as an Ambassador for Spinal Research. She uses her experience living with SCI to help others adjust to their injury. Over time she has adjusted and adapted to paralysis, and wants to share her story to help others see there is hope for the future.
Kayleigh says that, in her experience, her confidence has returned over the years. Since her injury she has gone on to do things she didn’t think would be possible again, like Disney holidays with her daughter.
“Overall, I’d say that living with paralysis does get better over time. Because of my catheter I used to never go out wearing shorts, for example, but now I don’t care if it’s visible. If someone sees my bag, so what?
“My advice to anyone who has recently sustained a spinal cord injury is to give yourself time. Let it sink in, digest everything, and calm down. You will be able to go out and enjoy the world again, and my inbox is open for anyone who is newly disabled.”
