Former Little Mix singer Jesy Nelson has sparked a national conversation and received a wave of public support after she publicly challenged the UK's failure to screen newborns for a rare genetic condition that affects both of her twin daughters.
A Mother's Campaign for a 36p Test
The 34-year-old star confirmed on Sunday via Instagram that her eight-month-old twins, Ocean Jade and Story, have been diagnosed with Spinal Muscular Atrophy Type 1 (SMA1). This disease causes progressive muscle weakness and loss of movement. In the days following her announcement, Nelson has drawn intense focus to the fact that the UK does not include a test for SMA1 in its routine newborn screening programme, despite it being available in 45 other countries, including the United States.
The most shocking revelation for many is the reported cost of the test: a mere 36 pence. Medical experts state that early detection via this affordable screening could allow for immediate treatment, drastically altering the prognosis and potentially enabling children to lead physically healthy lives.
Missed Signs and a 'Devastating' Reality
Speaking on ITV's This Morning, Nelson explained the heartbreaking consequences of the late diagnosis. Doctors from Great Ormond Street Hospital advised that her girls are now unlikely ever to walk or regain full neck strength. "I potentially could have saved their legs," Nelson said emotionally. "I don't think I'll ever be able to get over or accept it."
She recounted noticing early symptoms, such as the twins' "frog leg" position and unusual belly breathing, but was reassured by health visitors and GPs that their prematurity meant they might simply be delayed. "The part that frustrates me the most is I knew and saw all of the signs before I knew what SMA was," she stated.
Public Outcry and Political Response
Nelson's campaign has resonated deeply with other affected families across the UK. She reshared a post from follower Katie Hughes, mother of a boy with SMA, who called the 36p figure "devastating and shocking." Hughes wrote, "36p to change the course of a child's life, it's nothing really, is it?... It angers me that we're talking such a little amount."
The issue has now reached the highest levels of government. Health Secretary Wes Streeting has admitted that Nelson was "right to challenge and criticise how long it takes to get a diagnosis." He told ITV News his heart went out to Nelson and confirmed he is "determined to look not just at screening for SMA, but to make much better use of genomic medicine."
The Path Forward for UK Screening
Currently, the UK National Screening Committee does not recommend universal screening for SMA, though it has commissioned work to reassess this in light of new treatments. Notably, Scotland has announced it will begin screening babies for the condition from this spring.
Jesy Nelson's powerful advocacy has thrust a critical but overlooked gap in UK healthcare into the spotlight. By sharing her family's personal struggle, she has ignited a demand for change, emphasising that a simple, inexpensive test could prevent other children from facing a lifetime of disability.
