Jesy Nelson has spoken about the overwhelming guilt she feels over her twin daughters Ocean and Story, who were diagnosed with spinal muscular atrophy (SMA) after irreversible nerve damage had already occurred. The Little Mix singer admitted she failed to notice the early signs, saying, 'Why didn't I spot that?'
SMA Diagnosis and Campaign Victory
Nelson, alongside The Mirror, recently achieved a landmark victory after the government agreed to screen all newborns in England for SMA, one of the final acts of Sir Keir Starmer's government. Her daughters were diagnosed too late, and doctors have told her they will likely never walk. The singer lobbied the government and campaigned for universal testing after her own experience.
Reflecting on her guilt, Nelson told The Sun: '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. That’s the part where the guilt kicks in because I don’t understand how I didn’t see that.' She explained that as a mother of premature twins, she was focused on other health checks like temperature and breathing, and did not concentrate on their leg movements.
Mother's Role in Spotting Signs
Nelson credited her own mother with spotting the issue: 'Thank God for my mum, because God knows what position I would have been in if she hadn’t spotted it. That will probably never leave me. I’ll be honest, I don’t think it ever will. But I really hope as they get older, they understand how flipping amazing they are because they are the most resilient little girls I’ve ever known.'
Bittersweet Victory
Following the government's decision, Nelson described the win as 'bittersweet.' She told The Mirror: 'It's just amazing and it's also a bit of a bittersweet feeling at the same time. It's hard because I don't want this to sound like I'm not grateful and happy about it. What has just happened is amazing but it's just sad that it also took for my story to get it to this place, to give it this push to get it over the line. If this had been taken seriously a few years ago, maybe my girls wouldn't be in this situation... It's just amazing to know that from October [SMA] children are going to look so different.'
The new screening programme is expected to begin in October 2026, ensuring that babies with SMA are diagnosed early enough to receive treatment before irreversible nerve damage occurs.
