Jesy Nelson Shares Heartbreaking Diagnosis: Twin Daughters Battling Rare Spinal Muscular Atrophy Type 1

By Health & Entertainment Correspondent January 7, 2026

Former Little Mix star Jesy Nelson has opened up in a raw and emotional Instagram video about the devastating diagnosis facing her 8-month-old twin daughters, Ocean Jade and Story Monroe Nelson-Foster: Spinal Muscular Atrophy (SMA) Type 1, the most severe form of the rare genetic condition.

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The 34-year-old singer, who left the chart-topping girl group in 2020, posted the tearful update on January 4 to her 9.6 million followers, describing the past three to four months as “the most heartbreaking time of my life.” Nelson and her fiancé, musician Zion Foster, welcomed the twins prematurely on May 15, 2025, at just 31 weeks after a high-risk pregnancy complicated by pre-Twin-to-Twin Transfusion Syndrome (TTTS).

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The girls spent four weeks in the Neonatal Intensive Care Unit (NICU), an experience Nelson called overwhelming: “Nothing or no one will ever be able to prepare you as a parent for NICU. It’s the most scary, overwhelming feeling of emotions, not being able to feel like you can protect your babies.” Initial concerns arose when Nelson’s mother noticed the twins’ legs “weren’t moving as much as they should be,” and both parents observed feeding difficulties. Despite reassurances from health visitors that prematurity might delay milestones, persistent worries led to endless appointments culminating in confirmation at London’s Great Ormond Street Hospital.

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SMA Type 1 is a progressive neuromuscular disease that affects every muscle, including those for breathing and swallowing. Nelson explained: “It is the most severe muscular disease that a baby can get… Over time, it kills the muscles to the body, and if it’s not treated in time, your baby’s life expectancy will not make it past the age of two.” Doctors informed the couple that the twins would “probably never be able to walk” and “probably will never regain their neck strength,” leaving them facing lifelong disability.

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The diagnosis has transformed Nelson’s life: “I literally feel like my whole life has done a 360. I almost feel like I am grieving a life I thought I was going to have with my children.” She has had to quickly learn medical care, including using breathing machines, adding: “The hospital has become my second home… I have almost had to become a nurse.” Yet hope persists—the twins have started treatment, critical as 95% of motor neurons can be lost before six months. “Thankfully the girls have had their treatment, which I’m so grateful for because if they don’t have it, they will die,” Nelson said.

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Nelson is advocating for newborn screening to catch SMA earlier, highlighting how timely intervention improves outcomes. Her revelation has sparked widespread support and raised awareness, with charities like SMA UK noting increased inquiries. Zion Foster has also shared touching messages, emphasizing family strength.

Fans have flooded social media with love, praising Nelson’s courage. This personal tragedy adds to her history of openness about mental health struggles. As the family navigates this challenging path, Nelson’s message underscores resilience and the importance of early detection.

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