Former Little Mix singer Jesy Nelson has revealed that her twin daughters have been diagnosed with spinal muscular atrophy type 1 (SMA1), a rare genetic condition that means they are unlikely ever to walk. The 34-year-old and her fiancé, Zion Foster, welcomed Ocean Jade and Story Monroe Nelson-Foster in May after a premature birth at 31 weeks.
In an emotional Instagram video posted on Sunday, Nelson said the girls had been diagnosed after four months of “gruelling” hospital appointments. “We were told that they’re probably never going to be able to walk; they probably will never regain their neck strength, so they will be disabled,” she said. “Thankfully, the girls have had their treatment, which you know, I’m so grateful for because if they don’t have it, they will die.”
SMA1 is the most severe form of the genetic neuromuscular disorder, causing muscle weakness, progressive loss of movement and paralysis. According to the NHS, about 70 children are born with SMA each year in the UK, and without treatment fewer than one in 10 survive to age two. Nelson urged parents to look for signs such as floppiness, inability to hold themselves up, “frog-like” leg positioning, and rapid breathing in the tummy, stressing that “time is of the essence” for treatment.
Nelson said the diagnosis came after her mother noticed the twins were not moving their legs as expected. Because the babies were premature, doctors initially advised not to worry. “The reason I wanted to make this video was because the last few months has honestly been the most heartbreaking time of my life,” she said. “I literally feel like my whole life has done a 360, I almost feel like I’m grieving a life that I thought I was going to have with my children.”
Despite the prognosis, Nelson expressed hope: “I truly believe that my girls will fight all the odds and, with the right help, they will fight this and go on to do things that have never been done.” She also highlighted that the UK is “shockingly far behind” in not including SMA in the NHS newborn blood-spot screening test, which currently checks for nine rare conditions. Three new SMA treatments have been available on the NHS since 2019, and NHS Scotland began a pilot screening programme in September 2024.
