Former Little Mix singer Jesy Nelson’s 8-month-old daughters, twins Story and Ocean, have been diagnosed with a “severe muscle disease.”
“A few months ago, my mum noticed that the girls were not showing as much movement in their legs as they should be,” Nelson, 34, said in a Sunday, January 4, video shared via Instagram. “[It] wasn’t really a concern to me at the time because from the minute I left the NICU, I was told, ‘Your babies are premature, so do not compare your babies to other babies. They won’t reach the same milestones. Take them as they are.’”
Nelson and her fiancé, Zion Foster, welcomed their daughters early in May 2025 after a high-risk pregnancy.
“When the healthcare visit came, we were told, ‘They look great, they’re healthy and everything is fine,’” she recalled. “A few signs then started to show a bit later on that they were struggling to feed properly. It was getting gradually less and less and less.”
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Nelson continued, “Long story short, after the most grueling three [or] four months and endless appointments, the girls have now been diagnosed with a severe muscle disease called SMA Type 1.”
Spinal muscular atrophy (SMA), according to the Cleveland Clinic, is a genetic condition that causes worsening muscle weakness. There are five types of SMA, which range in severity.
“Type 1 is the most severe type that a baby can get. It stands for spinal muscular atrophy, which can affect every muscle in the body down to legs, arms, breathing, swallowing and … over time it kills the muscles in the body,” Nelson explained. “If it’s not treated in time, your baby’s life expectancy will not make it past the age of 2.”
Nelson and Foster, 27, subsequently underwent a “rapid process” to get their daughters treated for SMA Type 1.
“When [the doctors] assessed the girls, we were told they’re probably never going to be able to walk,” Nelson tearfully said. “They’ll probably never regain any strength, so they will be disabled. The best thing we can do right now is get them treatment and just hope for the best.”
Story and Ocean have since both completed their treatments.
“I’m so grateful because if they don’t have it, they will die,” the musician said. “It has just been endless, endless amounts of hospital appointments. I practically feel like the hospital has become my second home.”
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She added, “The last few months have been the most heartbreaking time of my life. I literally feel like my whole life has done a 360. I almost feel like I’m grieving the life I’m not going to have with my children. I [do] have to be grateful because, at the end of the day, they’re still here and that’s the main thing. They’ve had their treatment and I truly believe my girls will defy all the odds and, with the right help, they will fight this and go on to do things that have never been done.”
Nelson received plenty of support in the comments section from other parents and celebrity friends, including her ex-boyfriend Chris Hughes.
“A warrior, Jess. Be easy on yourself,” Hughes, 33, wrote via Instagram comment. “Sending prayers to you all, everyone behind you guys 🤍.”
