Jesy Nelson has thrown her weight behind furious parents across Britain after publicly challenging the UK’s newborn screening process for Spinal Muscular Atrophy (SMA) — revealing that a single test can cost as little as 36p.
The former Little Mix star, 34, confirmed on Sunday that her eight-month-old twin daughters with partner Zion Foster, Ocean Jade and Story, had both been diagnosed with SMA Type 1, the most severe form of the rare genetic condition. Sharing the news on Instagram, Jesy described the past few months as “the most gruelling three or four months” of her life.
Since then, she has used her platform to highlight the fact that babies in the UK are not routinely screened for SMA at birth — despite the test being available in around 45 countries worldwide, including the US. What has stunned parents most is the cost: just 36p, a figure that could mean the difference between early, life-changing treatment and irreversible disability.
Appearing on This Morning, Jesy explained that if SMA is detected early, treatment can dramatically improve outcomes. Because her daughters were not diagnosed at birth, doctors at Great Ormond Street Hospital later told her they are unlikely to ever walk or regain neck strength, meaning they will live with disabilities.
Parents of children with SMA have since flooded Jesy with messages of support. One mother, Katie Hughes — whose young son also lives with the condition — called the revelation “devastating and shocking”, admitting she was in tears after learning how cheap the test is. She said that 36p could have “massively changed” her child’s life, as well as the lives of countless others.
Jesy also spoke candidly about the early warning signs she noticed — bowed legs, unusual breathing, and what she described as a “frog-leg position” when her babies lay on her chest in neonatal intensive care. Despite raising concerns, she and Zion were reassured by health visitors and GPs that, because the twins were born prematurely, delays were to be expected.
“That’s the part I’ll never get over,” Jesy admitted on ITV. She said she believes early screening could have saved her daughters’ legs, adding that while she may never fully accept what happened, she is determined to fight for change so other families do not face the same heartbreak.
Health Secretary Wes Streeting has since acknowledged Jesy was “right to challenge and criticise” how long it takes to diagnose SMA in the UK. He said the government is now looking again at screening and the wider use of genomic medicine, while Scotland has already announced plans to begin newborn SMA screening from spring.
