Jesy Nelson has revealed that her twin daughters, Ocean Jade and Story Monroe, have suffered a fresh health setback, just as her campaign to screen newborns for spinal muscular atrophy (SMA) secured a major breakthrough. The former Little Mix star said she 'can’t stop crying' after learning all babies born in England will now be tested for the rare genetic condition at birth. However, Jesy described the historic change as 'bittersweet' because her daughters are 'not great'.
Twins' uncertain future
The 25-year-old said her twins’ future is uncertain as medics are still assessing how much of their muscles died off before they were diagnosed late and then treated. Both Ocean and Story were diagnosed with Spinal Muscular Atrophy Type 1, the most severe form of the muscle-wasting disease, after leaving hospital. Jesy explained that the diagnosis came too late after irreversible nerve damage, and it is likely they will never walk again.
Recent hospital review
Speaking to The Sun, Jesy discussed the twins’ most recent three-month review at Great Ormond Street Children’s Hospital, where doctors warned that the girls were not responding to treatment as hoped. 'Unfortunately, some of the numbers have gone down,' she said. 'We had a long discussion and there’s a possibility they may have to go back on treatment, which is just heartbreaking.'
Jesy expressed her emotional struggle: 'I constantly battle between manifesting they’re going to defy the odds and trying to come to accept that that may not happen. 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?'
Guilt and documentary
In her new Prime Video show, Jesy Nelson: Life Changing, the singer broke down in tears over the guilt she carries and worries her children will blame her when they’re older. She told the publication: '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. Why didn’t I spot that?'
Campaign success
This comes after Jesy shared heartbreaking footage of the moment she was told about her twins’ devastating diagnosis. The 35-year-old posted footage from her Amazon Prime Video series, which she 'urges' everyone to watch. In the clip, Jesy can be seen rocking one of her babies while she and her former partner, Zion Foster, receive news that her twins’ 'genetic test came back positive' for the life-altering condition. The screening program for newborns in England is a direct result of her campaign, but for Jesy, it is a bittersweet victory as her own daughters continue to face health challenges.
