Ben Williams, whose son Ollie was born with spinal muscular atrophy (SMA) five years ago, has expressed new hope after the government confirmed that screening for the condition will be rolled out across England. The Mirror had campaigned alongside parents for all babies to be tested at birth for SMA, achieving a significant victory this week.
Ollie's diagnosis and the impact of late detection
Ollie was diagnosed at three months old with the more severe Type 1 form of SMA, by which point irreversible nerve damage had occurred, wasting much of his muscle capability. Drugs available on the NHS can effectively cure SMA if administered at birth, but Ollie missed that window. He cannot sit unaided, requires a breathing machine for 14 hours each night, and is fed through a tube directly into his stomach.
Ben spoke to the Mirror from Ollie's bedside at William Harvey Hospital in Kent, where Ollie was admitted for an infection—a vulnerability for late-diagnosed SMA children. Ben, 37, said: "There has been a significant step forward here… It does take a toll on us. I knew there were more families coming to terms with this, having in the best case life-changing disability to live with, and in the worst case, death. That was hard to stomach when you know what you've been through, and knowing that someone else is out there going through that—and that it is totally preventable. Now they will get the opportunity for diagnosis and treatment pre-symptomatically that Ollie never got."
Family inspiration and ongoing challenges
Ollie's younger sister Hailey, now one year old, is reaching milestones that Ollie cannot, such as standing, sitting, crawling, and eating. Ben noted: "Hailey is one year old and is already achieving milestones that Ollie never could… That's upsetting but I try not to dwell on it. It worried me how Ollie might view himself when he saw his sister doing these things… But for now, he is so excited to see his sister standing, and that spurs him on. He wants to do more physiotherapy so that he can maybe one day stand. He's a brilliant big brother and he loves being around Hailey."
The campaign for newborn screening
The charity SMA UK began calling for newborn screening a decade ago. Ollie was born shortly before the first of three transformative treatments became available on the NHS. Despite these drugs being effectively a cure if given at birth, health chiefs refused to test newborns for SMA as part of the NHS heel prick test. This meant around 50 infants were diagnosed and treated too late each year, after irreversible nerve damage had occurred.
Ben and his wife Amy campaigned for years, citing international evidence that a £5 newborn blood test for SMA saves money in the long run and prevents lifelong disability and death. However, Ben insists the campaign is not over because Wales and Northern Ireland still have no plans to screen newborns for SMA. This means all 47,000 newborns there risk late diagnosis.
Ben said: "There is still work for us to do to get the entire UK population screened. I look round the rest of the developed Western world and the UK is a total outlier in the approach that it has taken. My frustration with the National Screening Committee is pretty intense."
Continued advocacy and future goals
The Mirror has been highlighting the SMA testing scandal since 2021 and launched a campaign with former Little Mix star Jesy Nelson earlier this year. SMA UK chief executive Giles Lomax, whose twins Finn and Zara have the condition, said: "It's too late for those of us living with SMA, for my twins and for those we must not forget who have died from the condition, but we have changed the future for SMA kids. Their families will never have to go through what we went through. But we will not stop until we get full coverage. We won't take our foot off the gas until every single baby in the UK is screened."
