Jesy Nelson has disclosed that her twin daughters, Ocean Jade and Story Monroe, have experienced a fresh health setback following the success of her campaign to introduce newborn screening for spinal muscular atrophy (SMA) across England. The former Little Mix star, 35, expressed that she 'can't stop crying' after learning all babies born in England will now be tested for the rare genetic condition at birth. However, she described the historic change as 'bittersweet' because her daughters are 'not great.'
Twins' Condition Worsens Despite Treatment
Ocean and Story, now 25 months old, were diagnosed with Spinal Muscular Atrophy Type 1—the most severe form of the muscle-wasting disease—shortly after leaving hospital. Nelson explained that the diagnosis came too late to prevent irreversible nerve damage, and it is likely the twins will never walk again. During a recent three-month review at Great Ormond Street Children's Hospital, doctors warned that the girls are not responding to treatment as hoped. 'Unfortunately, some of the numbers have gone down,' Nelson told The Sun. 'We had a long discussion and there's a possibility they may have to go back on treatment, which is just heartbreaking.'
Emotional Toll on Nelson
Nelson spoke candidly about the emotional struggle of balancing hope and acceptance. 'I constantly battle between manifesting they're going to defy the odds and trying to come to accept that that may not happen,' she said. 'It's a really weird position to be in because you think, 'well, if that doesn't happen, am I just going to feel heartbroken for the rest of my life?' Then you worry, if I accept it, am I also manifesting that?' In her new Prime Video series, Jesy Nelson: Life Changing, the singer broke down over the guilt she carries and fears her children will blame her when they are older. 'I know it's not my fault, but when I watch back videos of when I brought them home and they were kicking their legs, I realise now that over the course of a month, they just stopped,' she said. 'That's the part where the guilt kicks in because I don't understand how I didn't see that. Why didn't I spot that?'
Campaign Success and Public Response
Nelson's campaign for universal newborn SMA screening achieved a major breakthrough, with all babies born in England now tested at birth. She shared footage from her Amazon Prime Video series showing the moment she and her former partner, Zion Foster, received the twins' positive genetic test result. The series aims to raise awareness and urge viewers to understand the importance of early diagnosis.
