Jesy Nelson, the 34-year-old former Little Mix star, shares a poignant update on her twins’ battle with Spinal Muscular Atrophy (SMA), a genetic neuromuscular disease that weakens muscles by damaging motor nerve cells in the spinal cord. Type 1 SMA, the most severe form affecting her daughters Ocean and Story, carries a life expectancy of less than two years without treatment.
Twins’ Diagnosis and Advocacy Efforts
Nelson welcomed Ocean and Story in May with ex-fiancé Zion Foster. In January, both received diagnoses of SMA Type 1. The condition can appear in heel prick tests, yet it remains absent from standard newborn screenings across much of the UK. Nelson launched a campaign that gathered over 100,000 signatures to include SMA testing.
Scotland Pioneers UK Newborn SMA Screening
Scotland leads the UK by introducing newborn screening for SMA. Following the announcement, Nelson posted on Instagram, calling the development ‘bittersweet.’ She explained that early detection could have transformed her daughters’ lives.
In her statement, Nelson wrote: ‘Today my heart feels super heavy. It’s a very bittersweet moment knowing that Scotland has become the first UK nation to screen babies for SMA… We’re so close yet so far. I will never be able to understand why we still do not test for it here in England. To know that my girls’ lives and so many other children in England could look so different if this had been here for them… But nevertheless I will keep fighting and pushing for change because nobody should ever have to go through this heartache.’
Expert Insights on the Screening Pilot
Giles Lomax, chief executive of SMA UK, highlights the pilot’s potential impact: ‘Every month another four babies are diagnosed with SMA and the clock is always ticking… With all three treatments now routinely available through NHS Scotland alongside newborn screening, the future for anyone diagnosed with SMA is very different compared to their peers who were diagnosed symptomatically… It basically gives children the life they deserve.’ He notes the initiative will accelerate testing plans elsewhere in the UK.
Ongoing Care and Challenges
Nelson openly shares her family’s journey on social media. In a recent video, she discussed fitting her nine-month-old daughters with leg splints to correct their ‘pointed’ feet. ‘So today, I had to go pick up the girls’ splints because their feet are pointing, and they need to be flattened out. It made me really sad,’ she shared, displaying the tiny heart- and butterfly-patterned splints. ‘Have you ever seen anything cuter in your life? Made me sad though, because it’s just another reminder.’
Commitment to Awareness and Change
Despite the grim prognosis, Nelson continues filming her Prime Video series to raise awareness. During a Q&A, she stated: ‘I just hope people continue to watch the next part of the journey. When the girls got their diagnosis, we decided that we wanted to continue filming. As hard as it was, we were like, “You know what? There’s a reason you guys are here, and we’ve got to make the best out of this situation.”‘
She added: ‘I’m sure you guys are aware, like, I’m trying to get it [SMA] made part of the heel prick test. That’s my main goal right now, as well as looking after my beautiful girls. I haven’t even seen it back yet, but I already know it’s going to be tough. But I’m just so happy that we’ve been able to document everything, because I really believe that we’re going to make a change. Like, I feel it. I love how dedicated people are to spreading awareness about everything that I’ve been through, and this [programme] is going to shed even more.’
