Jesy Nelson has revealed she is now campaigning for babies to be screened for SMA1 at birth after learning her twin daughters might have avoided severe muscular disease if treatment had begun earlier.
The former Little Mix star, 34, shared the devastating news on Sunday that her eight-month-old daughters, Ocean Jade and Story Monroe, have been diagnosed with spinal muscular atrophy type 1 (SMA1) following what she described as “the most gruelling three or four months” of her life.
SMA1 is a rare genetic neuromuscular disorder that leads to progressive muscle weakness caused by the loss of motor neurons. It affects every muscle in the body, including those responsible for breathing and swallowing.
Now, speaking in a tearful Instagram video filmed from hospital, Jesy said she has submitted a petition to push for routine heel-prick testing for SMA in newborns — and insists she is “determined and ready to fight” to make it happen.
“If SMA1 is treated pre-symptomatically, at or near birth, the disease can largely be prevented,” she explained, adding that many children develop with minimal or no symptoms when early intervention is available.
In the video, Jesy thanked fans for the “outpouring of love and beautiful messages” from families dealing with the same diagnosis, admitting she has been overwhelmed by the support.
“I am starting a petition to try and get newborn screening from birth,” she told followers. “It’s currently under review, but I am so determined to make this part of routine testing. I’m going to fight as much as I can.”
She also confirmed she will be appearing on This Morning to discuss her daughters’ condition.
Jesy previously revealed that doctors initially dismissed her concerns because the twins were born prematurely. After leaving NICU, she was told not to compare them with full-term babies and was reassured by health visitors that they were “great and healthy.”
But it was her mum who first noticed something was wrong when the girls’ legs weren’t moving as expected. Further tests later confirmed SMA1.
Choking back tears, Jesy said: “If it’s not treated in time, your baby’s life expectancy will not make it past the age of two.”
Specialists at Great Ormond Street Hospital have warned that the twins may never walk or regain neck strength, meaning they will live with disabilities. The girls have now begun treatment, which Jesy says is vital to survival.
“Without it, they will die,” she said. “The hospital has become my second home. I’ve had to learn how to use breathing machines — things no mother should ever have to do.”
Jesy welcomed Ocean and Story with fiancé Zion on May 15, 2025, after a traumatic pregnancy complicated by twin-to-twin transfusion syndrome. The twins were delivered at 31 weeks and spent time in NICU.
Describing the emotional toll, Jesy admitted: “The last few months have been the most heartbreaking of my life. I feel like I’m grieving the life I thought I would have with my children.”
She ended her message urging parents to look for early signs such as floppiness, rapid breathing and bell-shaped bellies — and stressed again that heel-prick testing at birth “can literally save their legs and so many parts of their body.”
