Former Little Mix singer Jesy Nelson has ignited a crucial public health debate after revealing the UK does not routinely screen newborns for a devastating genetic condition that now affects both of her infant daughters.
A Mother's Campaign for Early Detection
The 34-year-old star confirmed on Sunday via Instagram that her eight-month-old twin girls, Ocean Jade and Story, have been diagnosed with Spinal Muscular Atrophy Type 1 (SMA1). This rare disease causes progressive muscle weakness and loss of movement. In a subsequent emotional appearance on ITV's This Morning, Nelson highlighted a critical failing: the UK does not test for SMA1 at birth, despite the screening being available in 45 other nations, including the United States.
The most shocking revelation was the cost. The simple test can be carried out for as little as 36 pence. Had it been part of standard UK newborn screening, early intervention could have dramatically altered her daughters' prognosis. Doctors at Great Ormond Street Hospital have advised Nelson that her girls are now unlikely ever to walk or regain full neck strength.
'36p to Change a Life': A Nation Reacts
Nelson's campaign has triggered an outpouring of support from other affected families across the country, many expressing anger and devastation at the missed opportunity. The singer reshared one poignant response from follower Katie Hughes, mother to a young boy with SMA.
'36p to change the course of a child's life, it's nothing really, is it?' Hughes wrote. 'I felt sick because 36p could have massively changed our little boy's life. It angers me that we're talking such a little amount.'
Nelson described the 'most gruelling three or four months' leading to the diagnosis. She recalled noticing early signs, such as the twins' 'frog leg' position and unusual belly breathing, but was reassured by health visitors and GPs that their prematurity might cause developmental delays.
'I potentially could have saved their legs,' she stated. 'All I can do is try my best and make change.'
Government Pledges to Review Policy
The issue has now reached the highest levels of government. Health Secretary Wes Streeting admitted Nelson was 'right to challenge and criticise how long it takes to get a diagnosis.' He told ITV News his heart went out to the singer and praised her for speaking out.
'She’s challenged us to go further on screening, and she is right to do so,' Streeting said, adding he was 'determined to look not just at screening for SMA, but to make much better use of genomic medicine.'
Currently, the UK National Screening Committee does not recommend SMA screening, though it has commissioned new work to reassess this in light of treatment advances. Scotland has announced it will begin screening babies from this spring, putting further pressure on health authorities in England, Wales, and Northern Ireland to follow suit.
Jesy Nelson's personal tragedy has transformed into a powerful public campaign, forcing a national conversation about a preventable, life-altering condition and the stark cost of inaction.
