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 may never walk. The 34-year-old shared the news in an emotional Instagram video on Sunday, saying the girls will 'fight all the odds'.
Nelson and her fiancé, Zion Foster, welcomed twins Ocean Jade and Story Monroe Nelson-Foster in May after a premature birth. The singer said the diagnosis came 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.
Spinal muscular atrophy type 1 is the most severe and common 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 said the twins have received treatment, which she described as life-saving. She urged parents to look for signs such as floppiness, inability to hold themselves up, 'frog-like' leg positioning, and rapid breathing in the tummy. 'Time is of the essence,' she stressed, adding that early detection is critical for better outcomes.
The singer also highlighted that the UK does not currently include SMA in the NHS newborn blood-spot screening test, a gap that charity SMA UK calls 'shockingly far behind'. However, three new SMA medicines have been available on the NHS since 2019, and NHS Scotland began a pilot screening programme in September last year.
Nelson previously spoke about complications during her pregnancy, including twin-to-twin transfusion syndrome, which required emergency treatment and a 10-week hospital stay before the twins were born at 31 weeks. Despite the challenges, she remains hopeful: '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.'
