A father has accused the government of "playing God" by refusing to introduce a routine newborn test for a devastating muscle-wasting disease, after his daughter was left in a wheelchair due to a delayed diagnosis.
The Heartbreaking Delay in Diagnosis
Three-year-old Ophelia-May Davies from Aberdare, south Wales, was not diagnosed with Spinal Muscular Atrophy (SMA) until after her second birthday. By this time, she had suffered irreversible nerve damage, meaning she is unlikely to ever walk. Her father, Warren Davies, 36, expressed his fury that the NHS in England and Wales does not screen for SMA at birth, unlike most other developed nations and, from this spring, NHS Scotland.
"We’re supposed to be a first world country and it’s absolutely shocking that the NHS doesn’t screen for this," Warren told the Mirror. "The Government is playing God in making the decision not to screen all babies." He emphasised that a simple £5 blood test could prevent the immense lifelong cost of caring for a child with advanced SMA.
A National Postcode Lottery for Treatment
The case highlights a stark postcode lottery within the UK. While Scotland prepares to roll out universal newborn SMA screening, the UK Government and the devolved Welsh administration are following a recommendation from the UK National Screening Committee (UK NSC) to conduct a pilot study first. This pilot is not expected to start until 2027 at the earliest, with a national rollout unlikely before 2031.
This delay comes despite overwhelming evidence, including a recent Lancet study, showing that adding SMA to the existing NHS heel prick test would save lives and be cost-effective for taxpayers. Since 2019, three transformative treatments have been available on the NHS which can halt the disease's progression, but they cannot reverse existing disability.
Ophelia was diagnosed too late to qualify for the one-off gene therapy Zolgensma. She now relies on daily medication to maintain her remaining muscle function and requires a 'Nippy' breathing support machine at night. Her life expectancy is estimated to be around 20 years.
A Family's Fight for Answers and Support
Ophelia's symptoms began around six months old, with a loss of muscle function in her neck and legs. Her parents, Warren and Rhiannon Rafferty, faced repeated assurances from health professionals that there was no issue. It was only after two years of pushing and after Rhiannon read about similar SMA symptoms on TikTok that the family secured a second opinion and the devastating diagnosis.
"The initial shock was difficult to take," Warren said. The family has since launched a GoFundMe page to fund private physiotherapy, citing limited NHS support. Their story echoes that of former Little Mix singer Jesy Nelson, whose twins were diagnosed with the severe Type 1 form of SMA.
A Welsh Government spokesperson stated they follow the advice of the UK NSC, which "does not currently recommend routine newborn screening to detect SMA." They added they would consider any future recommendations from the committee, leaving families in England and Wales in a painful limbo while a preventable crisis continues.
