Charlotte Casey, 25, from Bromsgrove, is living with Friedreich's Ataxia (FA), a rare genetic condition with a life expectancy of 36. Her older sister Olivia Dews, 28, has the same condition. The sisters are backing a petition calling for NHS access to Omaveloxolone, a medication approved in the UK in 2025 that could slow the disease's progression.
Diagnosis and impact on daily life
Charlotte was diagnosed with FA in July 2024. Six months later, Olivia received genetic test results confirming she had the same condition. FA is a progressive, genetic, neurodegenerative movement condition that causes damage to the nervous system, spinal cord, and peripheral nerves. Symptoms include poor balance, muscle weakness, and loss of coordination.
"It's literally taken all of our independence," Charlotte told Birmingham Live. "It just slowly kills away your muscles. You get nerve damage from it, it weakens your muscles, affects your balance and coordination, weakens your eyesight, your hearing, your heart. It can also affect things like bladder control."
Both sisters receive medical support for FA at the Queen Elizabeth Hospital in Birmingham. Charlotte described the everyday struggles: "From the moment we got diagnosed, it literally changed our lives forever. It's literally taken all of our independence and mobility. We need help with bathing, washing our hair. Being young women - we can't even do our own hair and makeup."
Campaign for NHS access to Omaveloxolone
Omaveloxolone was approved in the United Kingdom by the Medicines & Healthcare products Regulatory Agency in 2025. However, it is not routinely available on the NHS. A petition has been launched to fund NHS access, with the sisters supporting it in hopes of reaching 100,000 signatures so it can be discussed in parliament.
As of the time of writing, the petition has 26,422 signatures. Charlotte said: "The hardest thing at the moment is there's a medication out there and it's really frustrating. There's nothing to say it's going to work for us, and there's no cure and we're not asking for a miracle for our condition, but I believe that everyone in the UK with FA should at least have the opportunity to try this."
Early symptoms and the road to diagnosis
Charlotte's earliest symptoms began when she was a teenager. "I started suffering with symptoms from about 13 or 14," she said. "I always grew up thinking I was just clumsy, and it kind of progressed a lot, but I always just put it to the back of my mind."
After having her second child in November 2022, Charlotte noticed her condition worsening. "When I had my second child in November 2022, for a few days after I had her, like when I was getting up in the night, and to feed her, I'd go to the toilet and I was bumping into the walls - and I realised I couldn't walk without support of anything."
She initially put it down to "newborn tiredness" but her situation kept getting worse, prompting her to see her GP. She was eventually seen by a neurologist in Coventry, and genetic tests confirmed she had FA. Looking back, Charlotte noted symptoms such as tiredness, regular falls, and scoliosis were signs of the condition.
Impact on family and the future
The condition affects not just the sisters but their families as well. Charlotte, a mother of two young children, said she struggles even "dancing around the kitchen with our two little girls." She added: "It is really hard for everybody else, it's hard for us to explain to our kids. It doesn't just affect Liv and I - even though the symptoms are happening to us."
Olivia is currently going through "another period of deterioration," according to Charlotte. The sisters continue to support the petition, which aims to achieve 100,000 signatures for parliamentary discussion. With 26,422 signatures so far, the campaign remains active.
