Teen begs Andy Burnham for life-extending drugs as mum helplessly forced to watch decline

Teen begs Andy Burnham for life-extending drugs as mum helplessly forced to watch decline EXCLUSIVE: A 15-year-old girl is pleading for Prime Minister Andy Burnham's help as she faces the devastating reality of losing her independence to a rare, life-limiting condition A teenager in a race against time against a devastating illness has written a heartbreaking letter to Prime Minister Andy Burnham. Brogan Johnson, 17, from Leigh-on-Sea, Essex, was diagnosed with Friedreich's Ataxia (FA) in March 2025, after years of struggling with her balance and coordination. The rare and progressive neurodegenerative disorder causes damage to the nervous system, heart and pancreas and can cause problems with mobility, speech, swallowing and heart function. Sufferers often need a wheelchair within 10 to 20 years of the onset of symptoms, according to John Hopkins Medicine, and can die of heart failure. Now, Brogan is desperately campaigning for access omaveloxolone, a life-changing drug sold under the brand name Skyclarys, which can slow the progression of the disease. It costs around £1,000 a day to fund privately in the UK and currently isn't available on the NHS. The treatment was approved by the UK's medicines regulator in April 2025, but negotiations between the National Institute for Health and Care Excellence (NICE) and pharmaceutical company Biogen over NHS access have broken down. Brogan and her mum, Karly, 44, travelled to London this week to deliver an open letter to Mr Burnham at No 10 Downing Street, calling for urgent action to make the drug available to patients across the UK. Their campaign comes after a petition calling for access to the treatment attracted 100,000 signatures, including support from former heavyweight boxer Frank Bruno. In her deeply personal letter, Brogan laid bare the devastating impact the condition has had on her life, admitting she is terrified of what the future holds. "I'm scared of losing the things that make me who I am and the future I've always imagined for myself," she wrote. Brogan first began experiencing symptoms at around 10-years-old, when her family noticed she was becoming increasingly clumsy. Her mother said they initially sought private tests, and Brogan was wrongly diagnosed with dyspraxia around 2021. But as her symptoms continued, the family pushed for further investigations, eventually receiving the devastating news that she had Friedreich's Ataxia. Mum Karly told the Mirror: "I knew nothing about it. I was heartbroken and felt so isolated. It's one in 50,000, rare and life-limiting." The diagnosis left the family facing a future they had never imagined, with Brogan having to come to terms with the fact that her condition could progressively rob her of her independence. Karly recalled how her daughter's difficulties had become increasingly apparent during childhood. "Her balance and clumsiness was the main thing," she said. "On sports day, she couldn't keep up, she struggled on her scooter." Heartbreakingly, Brogan also faced bullying at school because of her mobility problems, something she described in her letter as being targeted for "something I can't control". She has spoken openly about the physical and emotional toll of living with the condition, explaining that even everyday activities can become a struggle. "My balance and coordination are affected, which makes walking difficult and means that I can be very unsteady and insecure on my feet," she wrote. "I always have to hold onto someone or use an aid. Things that other people can do without thinking can take much more effort for me." She added that she worries about falling, becoming weaker and losing more of her independence as the disease progresses. "I am only 17, and it is frightening knowing that this disease can keep taking more from me and could eventually take my life," she wrote. "I can work as hard as I can and fight as hard as I can, but I cannot make FA stop or go away." Brogan had always dreamed of becoming a vet, but has been forced to reconsider her ambitions because of the uncertainty surrounding her health. While other teenagers can look ahead to their futures with excitement, she says she is left worrying about what her condition might take away next. "I have my whole life ahead of me and there are so many things I still want to do," she said. ."But instead of just thinking about my future like other people my age, I have to worry about what FA might take away from me next and it scares me." The disease can also affect the heart, leaving Brogan frightened about the possibility of serious complications. "Knowing that it can shorten or take your life is something that is really hard to think about when you are only 17," she wrote. For Karly, watching her daughter navigate the condition while trying to secure the treatment she needs has become an exhausting and emotional battle. The mum said the family were initially told there was no medication available for Brogan, with clinical trials being explored in other countries. She said Brogan was subsequently unable to take part in a clinical trial because she had passed the age limit for a children's study but was considered too young for the adult trial. The family also faced a lengthy battle to secure specialist physiotherapy to help Brogan maintain her mobility and strength. Karly said the local authority initially offered just three hours of basic physiotherapy a year, despite the impact the condition was having on her daughter. After 26 months of fighting for additional support, Brogan eventually secured four hours of neurophysiotherapy a month this year. Karly said the treatment had made a significant difference, but she remains concerned about what lies ahead without access to a drug that could slow the progression of Friedreich's Ataxia. She said: "My mum had to battle for 26 months to get the neurophysio I needed put in place. It has made such a massive difference to me." Brogan has also started sharing her exercise journey on Instagram, hoping to encourage others living with Friedreich's Ataxia to keep moving and look after their physical and mental wellbeing. But she admits the psychological impact of the disease can sometimes feel overwhelming. In her letter, she revealed that there have been times when she has struggled with thoughts of not wanting to be here any more because of the changes to her body and the uncertainty about her future. "The emotional impact of FA has become extremely overwhelming at times," she wrote. "I feel overwhelmed by something that I have no control over and I am scared of what the future may hold." She said she was trying to cope with the changes and live as normally as possible, but wanted people to understand that the condition affects her mental health as well as her physical abilities. Her older sister, Morgan, 26, has also found the diagnosis difficult to process. Morgan said the family had known very little about Friedreich's Ataxia before Brogan was diagnosed, and she and her mum began researching the disease while hoping the tests would reveal something less serious. She told us: "It was awful. I'm the eldest, so trying to help everyone and make everyone feel good, when there's nothing we can do, I couldn't help." For Brogan, one of the hardest parts of the diagnosis is knowing that a treatment exists but remains out of reach for patients in the UK. Omaveloxolone is licensed in the UK and has been approved for use in other countries, but it has not been recommended for NHS use following the breakdown in negotiations between NICE and Biogen. The family believes more needs to be done to bring the two sides back to the negotiating table, arguing that patients with a progressive condition cannot afford to wait indefinitely. In her letter, Brogan wrote: "One of the hardest parts for me is knowing there is a medication that can help me and people like me, but we still can't access it in the UK." She added: "We haven't got time. Every day we are losing more of our independence." The family took their campaign to London on Tuesday, joining members of the wider Friedreich's Ataxia community to call for change. Although they did not get the opportunity to speak to anyone when they delivered the letter, Karly said the support from other families had been encouraging. She hopes to meet Andy Burnham in person to explain the reality of living with the condition and is also expecting a meeting involving Brogan and the health minister, arranged through their MP. Karly said she wanted decision-makers to understand the emotional toll of the family's fight and the uncertainty they face while waiting for a resolution. A NICE spokesperson said the organisation was unable to recommend omaveloxolone for NHS use because Biogen had withdrawn its evidence submission. Biogen, however, argued that it withdrew the submission after NICE indicated the treatment was unlikely to receive a positive recommendation. The company said: "We are in regular dialogue with NICE and the NHS to see how we can find a path forward." A Department of Health and Social Care spokesperson said: "We are very sorry to hear about Brogan's case and we fully understand her mother's concerns." The department said NICE was ready to resume the process with Biogen, adding that the NHS continued to offer services to help manage the condition in the meantime. But for Brogan, the uncertainty remains frightening as she tries to hold on to her independence and the future she had imagined before her diagnosis. She has urged the Government to help secure an agreement that would allow patients like her to access the treatment. "We need more opportunities, more research, and more hope for people living with FA. We need the UK to act now and make a difference," she said. "We are people living with a rare, life-limiting disease, and we are scared. We need change for our future. We need hope."