Former Little Mix singer Jesy Nelson has shared an emotional update on the health of her twin daughters, who have been diagnosed with spinal muscular atrophy type 1 (SMA1), a rare genetic condition that means they may never walk. The 34-year-old and her fiancé, Zion Foster, welcomed Ocean Jade and Story Monroe Nelson-Foster in May after a premature birth.
In an Instagram video posted on Sunday, Nelson said the girls were 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 disorder, causing muscle weakness and progressive loss of movement. 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. 'Time is of the essence,' she said, encouraging anyone noticing these signs to seek medical help immediately.
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. The charity SMA UK notes that early detection is critical, but the UK does not currently include SMA in its newborn blood-spot screening test. NHS Scotland launched a two-year pilot screening programme in September last year.
Nelson said the diagnosis came after her mother noticed the twins had limited leg movement and feeding difficulties. Initially, doctors attributed this to their prematurity. The singer described the past months as 'the most heartbreaking time of my life', adding, '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.'
