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BBC journalist Ben Morris shares his personal journey living with Spinal Muscular Atrophy (SMA), a rare genetic condition causing muscle weakness that worsens over time. Diagnosed with SMA type two as an infant, Ben’s parents were initially told he might not survive past his second birthday. However, defying these early expectations, he is now 25 years old, working independently with the support of personal care assistants and using an electric wheelchair for mobility. Ben describes his experience of using a ventilator overnight to aid breathing and taking the daily medication Risdiplam, which helps stabilize his condition.
The beginning of Ben’s life was marked by early signs that led his parents to seek medical advice. When he was around six months old, they noticed he was less active than peers, content to sit quietly rather than crawling or kicking. Although the first consultations with a GP suggested no immediate cause for concern, a simple test where Ben was allowed to fall sideways revealed his inability to react, prompting a critical diagnosis from a neurologist. The diagnosis of SMA type two came on 15 October 2001, accompanied by a grim prognosis. However, on a follow-up appointment early the next year, the neurologist noted Ben’s resilience, calling him “a survivor.”
SMA affects the respiratory system severely, making common infections potentially life-threatening for children with the condition. Ben’s family was supported by the Jennifer Trust (now Spinal Muscular Atrophy UK), which connected them to a broader community sharing similar challenges. Although his sister Emily does not have SMA, she may be a carrier of the gene. She has always treated Ben the same, embracing their sibling bond despite challenges like an operation Ben underwent for scoliosis. Their father applied his skills as a project manager to coordinate multiple healthcare and support services, ensuring seamless care for Ben from an early age.
Ben attended mainstream school with assistance from a teaching assistant to help him fully access the curriculum and participate in all activities alongside his classmates. This continuous, thoughtful planning allowed him to achieve many milestones, including racing on the track at London Stadium during a test event for the 2012 Olympics, speaking to notable figures at 10 Downing Street, and earning a journalism degree from the University of Winchester. Meanwhile, former Little Mix star Jesy Nelson recently revealed her twin daughters have been diagnosed with SMA type one and is campaigning for routine newborn screening to ensure early treatment and improved outcomes for babies diagnosed with the condition. Ben emphasizes that while SMA presents significant challenges, a fulfilled life living with the disease is entirely possible
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