Former Little Mix star Jesy Nelson has met Health Secretary Wes Streeting to demand the rollout of newborn screening for spinal muscular atrophy (SMA), a condition diagnosed in her twin babies. The meeting, held with charity SMA UK, highlighted the devastating consequences of late diagnosis.
The Mirror is campaigning for a simple £5 heel prick test for SMA to be added to the standard newborn screening, a test already routine in most developed nations. Currently, UK babies are not routinely screened, leading to irreversible nerve damage in the first weeks of life.
Streeting praised Nelson's bravery, stating it was a 'privilege' to hear her experience. He noted that the UK National Screening Committee has recommended a large-scale study into newborn screening for SMA, with hundreds of thousands of babies expected to be screened as part of an NHS trial. 'There are now more treatments available for spinal muscular atrophy than ever before,' he said.
Pharmaceutical firm Novartis estimates that 33 UK babies each year are left reliant on wheelchairs due to late diagnosis. The one-off gene therapy Zolgensma, available on the NHS since 2021, can effectively cure the condition if administered before muscle neurons are lost.
Nelson previously told ITV's This Morning that she 'will never accept' that her children's legs could have been saved with earlier screening. 'When you know there is something that could be done about it and it is life changing for your child, that’s the part that I cannot accept,' she said. The meeting will be featured on This Morning on Tuesday.
