Mum-of-three with rare condition fights for NHS treatment after losing two brothers

Mum-of-three with rare condition fights for NHS treatment after losing two brothers A mum-of-three desperate for more time with her children fears she is running out of time as she fights for NHS access to a treatment she hopes could give her more years with them A mum who lost two brothers to a rare genetic disease is fighting for a treatment that could give her more time with her three children. Becca Barnes, 32, is raising money for the rare condition as she fears she is running out of time. She was diagnosed with Friedreich Ataxia (FA) after consecutively losing two brothers to the condition. Her 19-year-old brother died from the genetic condition in 2009, when she was just a teenager. Five years later, her eldest brother, Chris, died when he was 29 after falling victim to the disease. After Chris’ death, Becca began researching the condition and found out that a baby had a 25% chance of developing it if both parents carry the gene. After undergoing a test, Becca received the devastating news that she too was a carrier. She said: “The average life expectancy is only into the mid-30s. I’m about to turn 33.I’m just a mum with 3 children, I don’t want anything special. I just want to be here. I want to watch them grow up and I want to be able to take them places, make memories with them and just be with them.” In a GoFundMe fundraiser, she explained that when her brothers were diagnosed, few professionals had heard of the condition. She said: “My mum wasn’t really given much information on it and was actually wrongly told at the time there was pretty much no chance me or my sister would have it. “They said that it was more common in boys and only one out of her four children had the chance of having it, so the fact two did basically ruled us out. “ For close to a decade Becca has kept her diagnosis private. But the symptoms for the deadly disorder are beginning to show. She said: “You always think you’ve got time, I’m showing more symptoms and I’m thinking ‘wow, it’s actually real.’ She told the Manchester Evening News: “It’s always been this thing in the back of my head that I never fully admitted and accepted to because I didn’t have to, but now I do. She added: “I get anxiety now going into pubs and stuff, they’ll think I’m drunk because I walk like I’m drunk.” “It affects my everyday life, going to the shop and grabbing bottle of milk. Basic things that you take for granted, that you don’t even realise other people actually have to think about.” Friedreich Ataxia is a rare inherited disorder that works by damaging the spinal cord, peripheral nerves, and the cerebellum part of the brain. This can lead to issues with a person’s movement and sensory faculties. Symptoms include difficulty walking, poor balance, loss of feeling in arms, legs or other parts of the body, slurred speech, loss of hearing, vision, fatigue and more. Omaveloxolone, a drug for the condition is used in the US and parts of Europe. It was given regulatory approval in 2025 but still remains unavailable on the NHS and private care comes at a cost of £250,000 a year. Becca is fundraising to access the treatment privately and wants to raise awareness with her story to push a petition calling for the drug to be made available on the NHS. She said: “Now, it’s a lot more known, but it’s bittersweet, I’ve got it myself so I need it, I need the awareness, I need the medication. It’s just sad that it wasn’t an option for my brothers. “We’re not asking for a miracle, it isn’t a cure, it’s not going to make me what I was like five years ago. But I’m not asking for much, I’m just asking to be here.” She added: “I do everything I can to keep myself as well as possible. I work, I try to carry on as normal and I refuse to let this condition completely take over my life.” You can donate to her fundraiser here and sign the petition here