Babies in the UK are at risk of unnecessary paralysis due to delays in testing for spinal muscular atrophy (SMA), a condition that causes muscle wasting. Prompt administration of gene therapies at birth can prevent paralysis, as demonstrated by the experience of pop star Jesy Nelson’s twin babies who lost mobility before receiving a belated diagnosis and treatment.

The Mirror has launched a campaign urging the NHS to include an SMA test in the newborn heel prick screening. SMA patients have a genetic fault that hinders the production of the SMN protein essential for nerve cell health and muscle function. Without this protein, motor neurons deteriorate, leading to muscle weakness and wasting, particularly in the limbs and chest.

While there are three NHS-approved treatments for SMA, they are most effective when administered early to prevent irreversible nerve damage. The UK lags behind other countries in newborn screening for SMA, with only ten health conditions checked compared to more comprehensive screenings in other European nations. Despite accumulating evidence supporting early intervention benefits, the UK National Screening Committee has delayed adding SMA to routine screenings, opting for further evaluation.

Although Scotland has decided to implement newborn SMA screening, parts of England are still awaiting the in-service evaluation, delaying potential nationwide screening until at least 2031. This delay risks leaving an estimated 160,000 babies annually untested, potentially resulting in late SMA diagnoses. Medical professionals and experts have criticized the delay, citing ethical concerns over the need for a control group in the research approach.