Jesy Nelson has revealed she is preparing to launch a petition calling for all newborn babies in the UK to be screened for spinal muscular atrophy (SMA), after her own twin daughters were diagnosed with the most severe form of the disease.
The former Little Mix star, 34, shared an emotional update with fans after announcing that her twins, Ocean Jade and Story Monroe, born in May, have SMA Type 1 – a rare genetic condition that causes rapid muscle weakness and can be fatal if left undiagnosed.
Doctors have told Jesy that her daughters may never walk. Determined to prevent other families from facing the same heartbreak, the singer has now vowed to fight for a major change in newborn screening across the NHS.
SMA Type 1 is the most severe form of spinal muscular atrophy. While treatments are available, outcomes depend heavily on how early the condition is detected. Jesy believes that a simple heel prick test at birth could save babies’ muscles – and their lives.
Although the NHS currently offers a heel prick blood test at five days old to screen for nine serious conditions, SMA is not included. NHS Scotland has confirmed it will introduce SMA screening in 2026, but NHS England has yet to announce similar plans.
Speaking directly to fans in an emotional Instagram video, Jesy thanked supporters for their overwhelming response, saying she was genuinely moved by the kindness shown to her family and the wider SMA community. She explained that she is now starting a petition to have SMA added to newborn screening from birth, stressing that she is “so determined” to make it happen and will “fight as much as I can” to push the change through.
Jesy also revealed she will appear on ITV’s This Morning to speak openly about life with two babies diagnosed with SMA Type 1, describing them as her “two beautiful baby girls” and promising to keep supporters updated as the petition moves forward.
When announcing her daughters’ diagnosis, Jesy described SMA Type 1 as “the most severe muscular disease that a baby can get,” admitting that while her children will be disabled, the family’s focus is now on treatment and hoping for the best possible outcome.
Using her platform, Jesy is also raising awareness about early warning signs of SMA. She has spoken candidly about how her initial concerns were dismissed by doctors, partly because her twins were born prematurely. It wasn’t until feeding difficulties became severe that further tests were carried out – months after symptoms first appeared.
Jesy believes that if SMA had been tested for at birth, precious time – and muscle function – could have been saved. Now, she hopes her campaign will ensure other babies are diagnosed early enough to change their futures.
