Olivia Dews and Charlotte Casey are campaigning for NHS access to a drug they say could give them more time with their children.
The sisters, 28 and 25, were both diagnosed with Friedreich’s ataxia after years of dismissing their symptoms as mere clumsiness. The rare genetic condition attacks the nervous system and progressively robs patients of mobility, cutting average life expectancy to just 36 years.
“We’ve had looks in the past that people think we are intoxicated or under the influence because it gives us that sort of walk,” Olivia explained in an interview. The Brit siblings now depend entirely on family for basic daily tasks they once handled alone.
“We can’t really leave the house on our own. Everyone else has to do our food shopping for us,” she added. Both women require assistance using the bathroom, washing, and preparing food.
Charlotte’s husband serves as her full-time caregiver, helping her with eating and drinking. “I have to drink through a straw. It takes me a while to eat my food and cut up my food,” Charlotte shared.
“The hardest part of Friedrich’s ataxia is that we don’t know how we’re going to wake up tomorrow and how our symptoms will be,” she continued. “Because it’s a degenerative condition, things could change, and we could worsen overnight.”
Charlotte also highlighted the cardiac dangers that accompany the disease. Friedreich’s ataxia causes cardiomyopathy, and heart complications frequently prove fatal for young patients living with the condition.
For Olivia, the diagnostic trail began at age 14 when doctors identified her scoliosis — a curvature of the spine that later proved to be an early symptom of the underlying disease. “At the age of 14, I got diagnosed with scoliosis, which we didn’t know back then, but that’s a symptom of Friedrich’s ataxia,” she said.
“Both of us have always been quite clumsy and had falls, but that’s all we thought it was – pure clumsiness,” Olivia recalled of their years without answers.
The sisters are now petitioning for omaveloxolone, an approved drug they believe could significantly slow the disease’s deadly progression, to receive government funding through the UK’s National Health Service.
“Everybody who has Friedreich’s ataxia deserves the chance to try it and see if it works for them and how it works for them,” Charlotte said. “People with Friedreich’s ataxia have never had any hope or treatment. And even though it’s not a treatment or a cure, it’s hope that it could potentially prolong life.”
She noted the small but significant population affected: “There’s around 1,100 people in the UK diagnosed with Friedreich’s ataxia.”
Beyond their push for parliamentary discussion of the medication, the sisters are working to increase public understanding of a widely misunderstood condition. “As much as we obviously want to push for the signatures for the medication to be discussed in Parliament, we also want to raise awareness around it because not many people know about Friedreich’s ataxia and it’s really misunderstood,” Charlotte concluded.
Friedreich’s ataxia is a rare inherited genetic disease that damages the spinal cord, peripheral nerves, and the cerebellum portion of the brain, according to Johns Hopkins Medicine. It is caused by a recessive genetic defect in the FXN gene, requiring a child to inherit a faulty copy from both parents to be affected. The disorder gradually causes unsteady movement, loss of feeling from severe nerve injury, heart disease, spinal curvature, and diabetes. While no cure exists, treatments including physical therapy and surgery aim to manage symptoms.
The sisters’ petition for omaveloxolone funding continues to gather signatures for presentation to UK Parliament.