Dad who campaigned to save SMA babies from lifelong disability tells of new hope

A dad who campaigned for years to save babies diagnosed late with a muscle wasting disease has told of his new hope for the future. Ben Williams’ son Ollie was born with spinal muscular atrophy five years ago, and he is part of a small community of brave parents who devoted their lives to preventing other families going through the same devastating ordeal. The Mirror had also campaigned for all babies to be tested at birth for SMA which achieved a huge victory this week when the government confirmed screening will be rolled out across England. Ollie was diagnosed at three months old with the more severe Type 1 form of SMA, and by that point irreversible nerve damage had been done so much of his muscle capability had wasted away. Drugs are available on the NHS to prevent damage which are effectively a cure - but only if administered at birth. Ben spoke to the Mirror from Ollie’s bedside having been admitted to William Harvey Hospital in Kent for an infection, to which late-diagnosed SMA children are extremely vulnerable. 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.” Ollie, from Wye in Kent, was diagnosed at three months old so he cannot sit unaided. He is attached to a breathing machine for 14 hours every night while he is accompanied by a nurse at his bedside to check his airways are working. Ollie is unable to eat unaided so is fed through a tube directly into his stomach. Last year Ollie had a younger sister, Hailey, who is now learning to stand - which has inspired him to work hard to maybe stand one day. Ben said: “Hailey is one year old and is already achieving milestones that Ollie never could. She's standing, she's sitting, she's crawling, she's eating. She's strong in a way that Ollie physically isn't. “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 and it worries me how he might view himself in the future. “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 charity SMA UK started calling for newborn screening a decade ago. Ollie was born five years ago shortly before the first of three transformative treatments were rolled out on the NHS. Despite these drugs being effectively a cure if administered straight after birth - health chiefs refused to test newborns for the condition as part of the NHS heel prick test. It meant around 50 infants were being diagnosed and treated too late every year, after irreversible nerve damage had taken place. Ben and his wife Amy embarked on years of futile campaigning, pointing to international evidence that a £5 newborn blood test for SMA saved not only money in the long run - but prevented lifelong disability and death. But Ben insists the campaign for SMA babies is not over - because Wales and Northern Ireland still have no plans to screen newborns for the condition. It means all 47,000 newborns there risk having SMA diagnosed late. 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.” 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 calling for screening. 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.”