The parents of a severely disabled five-year-old boy have issued a stark warning, blaming years of NHS delays for their son's condition and urging health chiefs to prevent other families from enduring the same heartbreak.
A Family's Plea to Halt Needless Disability
Ollie Williams, aged five, cannot breathe, eat, or sit without support. His severe disability resulted from a three-month wait for a diagnosis of spinal muscular atrophy (SMA) after his birth. During those crucial early weeks, motor neurons were left to die before treatment could begin.
His parents, Ben and Amy, are now supporting a campaign by The Mirror to add SMA to the NHS newborn heel prick test. This simple £5 blood check is already routine in most developed nations, including the US and nearly three-quarters of Europe.
"We don’t want to see his story repeated," they said. Estimates from pharmaceutical firm Novartis suggest 33 babies in the UK are left in a wheelchair each year due to late diagnosis.
The Cost of Delay and a Postcode Lottery
Ollie has Type 1 SMA, the most common and severe form. He uses an oxygen machine at night, is fed via a tube into his stomach, and requires a £15,000 power chair. Daily physio and a special machine to clear his airways are essential to keep him alive.
Despite the availability of three major treatments on the NHS since 2019—including pioneering gene therapies that can virtually eradicate the condition if given from birth—screening has been stalled. The UK National Screening Committee first decided not to add SMA to the newborn programme in 2018.
It has since called for more research and is planning an NHS pilot, creating a postcode lottery where babies in some parts of England and Wales are screened but not others. A full rollout is unlikely before 2031. In contrast, NHS Scotland will add SMA to its routine heel prick test this spring.
A National Outlier in Healthcare
Ben Williams criticised the committee's approach: "The committee’s pursuit of the perfect dataset... is directly contributing to unnecessary disability and, in some cases, death." He referenced the recent late diagnosis of ex-Little Mix singer Jesy Nelson's twins, Ocean and Story, who will likely never walk.
The UK is a global outlier in newborn screening. While Italy checks for 48 conditions and Austria for 31, the UK heel prick test only screens for 10 out of a potential 50 serious health conditions. SMA screening is now in place in 45 countries, including war-torn Ukraine.
The family's story highlights a tragic lack of awareness. Amy, Ollie's full-time carer, recalled medical professionals repeatedly dismissing concerns about his floppiness and weight loss. It was only during a Zoom call with other new parents that they realised how still he was compared to other babies.
The Williams family has since welcomed a daughter, Hailey. Because she has an older sibling with SMA, she was tested and found to be unaffected. "It just doesn’t make sense why we can’t just test all babies," Amy said.
