Former Little Mix singer Jesy Nelson has shared the devastating news that her eight-month-old twin daughters have been diagnosed with a severe and rare genetic muscle-wasting disease, after medical professionals initially dismissed her early concerns.
A Mother's Heartbreaking Diagnosis Journey
Jesy Nelson, who welcomed her twin girls Ocean Jade and Story Monroe prematurely at 31 weeks in May last year with fiancé Zion Foster, described the last few months as "the most heartbreaking time of my life". Speaking to her followers in an emotional video, she revealed the twins have been diagnosed with Spinal Muscular Atrophy (SMA) Type 1, the most severe form of the disease.
The singer explained that her own mother first noticed the infants "were not showing as much movement in their legs" as expected. However, Jesy said she was initially reassured by medical advice not to compare her premature babies' development to others. "From the minute I left NICU (Neonatal Intensive Care Unit), I was told 'your babies are premature, so do not compare your babies to other babies'", she recounted.
Even when Jesy raised concerns about their feeding, health visitors told the family the girls were "great and healthy". It was only after months of tests and an assessment at London's Great Ormond Street Hospital that the grim diagnosis was confirmed.
The Severe Reality of SMA Type 1
Jesy revealed the shattering prognosis given to her and Zion. "We were told they were never going to be able to walk. They would probably never regain their neck strength. They will be disabled," she said. SMA Type 1 causes progressive muscle weakness, affecting swallowing, breathing, and motor skills.
Without urgent treatment, children with this form of the disease often do not live beyond two years of age. "If they didn't have it they would die," Jesy stated, adding her profound gratitude that her daughters have now received treatment.
The condition has turned the family's life upside down. "The hospital has become my second home," Jesy said, explaining she has had to become a makeshift nurse, performing tasks like operating breathing machines. "I've had to do stuff no mother should have to do to their child... I am grieving a life I thought I was going to have with my children."
The Fight for Newborn Screening and a Message of Hope
The case highlights a critical issue in UK healthcare. Babies in the UK are not routinely screened for SMA at birth, unlike in some other countries. For treatments to be most effective, they must often be administered within the first weeks of life. A two-year pilot programme for newborn SMA screening is due to begin in Scotland in 2026, with campaigners urging a UK-wide rollout.
Despite the anguish, Jesy and Zion are clinging to hope. Her fiancé, who proposed in September, shared a photo of the twins "smiling through the challenges", adding "Daddy loves you so much". Jesy, fighting back tears, said: "I truly believe that my girls will defy the odds and with the right help they will fight this."
The twins' health struggles follow a complex pregnancy where Jesy was diagnosed with twin-to-twin transfusion syndrome (TTTS), requiring emergency surgery and a 10-week hospital stay before their premature birth on 15 May.
