Charlotte Casey, 25, and her sister Olivia Dews, 28, both from Bromsgrove, are living with Friedreich’s Ataxia (FA), a rare, progressive genetic condition that severely impacts their muscles, balance, coordination, and heart function. Charlotte, a mother of two young children, was diagnosed in July 2024, with Olivia receiving her diagnosis six months later.
FA causes progressive damage to the nervous system, spinal cord, and peripheral nerves, leading to symptoms including muscle weakness, poor balance, impaired coordination, vision and hearing difficulties, and bladder control issues. The sisters describe the condition as slowly “killing away” their muscles and taking away their independence.
Despite an approved treatment, Omaveloxolone, being available in the UK since 2025, it is not routinely accessible on the NHS. This medication has the potential to slow the progression of FA, offering hope to those diagnosed. Charlotte and Olivia are backing a petition calling on the government to fund NHS access to Omaveloxolone. The petition aims for 100,000 signatures to enable parliamentary discussion and currently has over 26,000 supporters.
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Charlotte shared the challenges the sisters face daily, from needing help with personal care to struggling with mobility and simple tasks such as washing their hair. “It has been really hard adapting to the challenges as our condition is progressive. We can’t do our own hair and make-up. It’s taken our independence,” she said.
The emotional and physical toll of this condition extends beyond the sisters themselves, affecting their families and especially difficult to explain to their children. Charlotte recalled the early symptoms, which began in her early teens but took years to be properly diagnosed. Increasing clumsiness and fatigue were misinterpreted until a genetic test confirmed FA during medical appointments following postnatal concerns.
Both sisters currently receive specialised care for FA at the Queen Elizabeth Hospital in Birmingham. Charlotte emphasised the frustration of having a medication that could potentially help but not being able to access it through the NHS. “We’re not asking for a miracle, but everyone with FA in the UK should have the chance to try this treatment.”
Their campaign highlights the urgent need for improved support and treatment availability for people living with this debilitating condition.