Former Little Mix singer Jesy Nelson has said her twin babies will 'fight all the odds' after being diagnosed with spinal muscular atrophy type 1 (SMA1), a rare genetic condition that means it is unlikely they will ever walk. The 34-year-old and her fiancé Zion Foster welcomed daughters Ocean Jade and Story Monroe in May, born prematurely at 31 weeks.
In an emotional 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. The twins have received treatment, which Nelson described as vital: '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, around 70 children are born with SMA each year in the UK, and without treatment fewer than one in 10 survive to age two. Three 'transformative' new medicines, including gene therapy, have been available on the NHS since 2019.
Nelson said she wanted to raise awareness of the condition and its signs: floppiness, inability to hold oneself up, 'frog-like' leg positioning, and rapid breathing in the tummy. She urged parents to seek medical help quickly, adding that 'time is of the essence'. The diagnosis was first suspected by her mother after the twins showed reduced leg movement and later struggled with feeding; doctors initially told them not to worry due to prematurity.
The singer described the past months as 'the most heartbreaking time of my life', saying she feels 'like I'm grieving a life that I thought I was going to have with my children'. However, she 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.' Nelson also previously spoke about complications during pregnancy, including twin-to-twin transfusion syndrome, which required emergency treatment and a 10-week hospital stay.
