### Welsh Family Finds ‘Hope’ As Genetic Discovery Sheds Light on Rare Paralysing Condition
The family of Timothy Bingham, who was left paralysed as a toddler after developing what seemed like a simple bout of flu, has spoken of their renewed hope following a scientific breakthrough that could one day lead to a treatment for the rare and devastating illness.
Timothy, now 28, first exhibited symptoms when he was just two years old. After a mild flu-like infection, he suddenly lost the ability to walk. Three years later, after another routine illness, the condition progressed dramatically, leaving him paralysed and reliant on a wheelchair for the rest of his childhood and adult life.
His mother, Kate Bingham, described the profound impact: “What appeared to be a harmless virus inflicted terrible damage over time. It began with his legs, soon affected his arms, and eventually compromised even his respiratory function. Timothy now needs around-the-clock assistance—he cannot move unaided in bed, needs turning all night long, and basic functions like coughing or drinking require help.” She emphasised how the everyday abilities many people take for granted have been stripped away from her son.
For years, the precise cause of such severe neurological responses to mild infections remained a mystery. The unusual condition was once again thrust into the spotlight in 2011, when an eight-month-old girl experienced life-threatening paralysis after a simple chest infection, necessitating permanent ventilation support. When doctors noticed similar symptoms in her two brothers, suspicions heightened that genetics could be at play.
This week, scientists at the University of Manchester have published compelling research uncovering the genetic culprit. Their study, published in the peer-reviewed journal *Lancet Neurology*, identified alterations in the gene RCC1 in 24 children across 12 families worldwide, spanning the UK, Europe, the Middle East, and South Asia. The team, led by Professor Bill Newman, discovered that this mutation impairs the body’s ability to respond safely to common infections, triggering catastrophic nerve damage.
Professor Newman commented on the work: “Before this study, we had minimal understanding of why certain children develop severe nerve injuries from ordinary illnesses like influenza or a stomach bug. Our findings offer families an explanation and lay the groundwork for future treatments. Since children are typically healthy before the onset, there’s a chance to intervene early and hopefully prevent lasting damage.”
The research further revealed similarities between the newly identified condition and known disorders such as Guillain-Barré syndrome—where the immune system attacks the nerves—and motor neurone disease. These overlaps, experts believe, could provide critical insight into both the rare syndrome affecting Timothy and much more prevalent neurological diseases.
The significance of the discovery is not lost on Timothy’s family. Kate Bingham, who lives in Cheltenham, Gloucestershire, remarked, “Learning that a specific gene is responsible changes everything for us. For years, we lived in uncertainty, never understanding the full picture. This breakthrough finally brings us hope and, perhaps, a way forward. It also paves the way for families like ours across the globe who have waited far too long for answers.”
Kate also shared her admiration for her son’s resilience. “Tim has coped with so much and yet has built a fulfilling life. He has a wonderful girlfriend he met online, showing that there’s more to life than the boundaries of a condition.”
The study was supported by major health research charities including the National Institute for Health and Care Research, LifeArc, and the Wellcome Trust. Sam Barrell, chief executive at LifeArc, said, “For those with rare conditions, obtaining a diagnosis can take years—sometimes decades, as in Timothy’s case. Identifying this gene offers a real target for future therapy and marks the beginning of a brighter, more certain future for families suffering from similar diagnoses.”
While much research remains before a treatment can be developed, the Bingham family’s story underscores the importance of continued scientific enquiry. It also offers a rare glimmer of optimism to those navigating the often isolating world of rare neurological diseases.