Jesy Nelson has revealed she is launching a determined campaign to push for life-saving SMA screening to be included in routine NHS tests at birth, after her baby twin daughters were diagnosed with the most severe form of the rare condition.
The former Little Mix star, 34, shared the heartbreaking news this week that her daughters, Ocean Jade and Story Monroe, have spinal muscular atrophy type 1 (SMA1) — a rare muscle-wasting disease that can be fatal before the age of two without early treatment.
Now, Jesy has told fans she is “going to fight” to make sure no other family has to endure the same ordeal, revealing she is launching a petition to demand SMA testing be carried out on newborn babies as standard.
Taking to Instagram, Jesy thanked fans for the overwhelming support before explaining her next steps. She said she was genuinely overwhelmed by the outpouring of love and messages, adding that the support meant everything not just to her, but to so many families dealing with what she described as a “horrible diagnosis”.
Jesy went on to explain that she is starting a petition to push for SMA screening to be added to the newborn heel-prick test from birth. She stressed she is completely determined to make it happen and vowed she would fight as hard as she possibly can to see the change made, confirming the proposal is currently under review.
The singer gave birth to her twin girls prematurely at just 31 weeks with partner Zion in May last year. She admitted early warning signs were repeatedly dismissed because the babies were born nine weeks early.
Jesy explained that her mum, Janice White, first noticed something might be wrong when the twins were not moving their legs as much as expected. But doctors reassured the family not to compare them to other babies due to their premature birth, telling them they would reach milestones in their own time.
Health visitors also reassured Jesy when the babies began feeding less, insisting they were “great and healthy” and advising the couple to keep trying little and often. It was only after months of tests that Ocean and Story were finally diagnosed with SMA type 1.
Calling it the most devastating period of her life, Jesy admitted her whole world has been turned upside down. She said she is grieving the life she thought she was going to have with her children, while also acknowledging how grateful she is to have them.
Despite the diagnosis, Jesy insisted she believes her daughters will defy the odds. She said she truly believes that with the right help, they will fight this and go on to do things that have never been done.
Medical experts have backed Jesy’s call. Professor Asma Khalil, Professor of Obstetrics and Maternal Fetal Medicine at St George’s Hospital, University of London, explained that early signs of SMA in premature twins — such as weak movement or feeding difficulties — are often mistaken for effects of prematurity, delaying crucial diagnosis and treatment. She stressed that early intervention can make a life-changing difference and praised Jesy’s bravery for speaking out.
Jesy has since been flooded with support from celebrity friends and fans alike. Amy Childs sent love and strength to Jesy and her girls, while Megan McKenna said her heart was breaking for the pain Jesy is going through. Jess Wright, Ashley James and I’m A Celebrity star Shona McGarty also shared emotional messages of support.
