The battle against Spinal Muscular Atrophy has taken a step forward, but Jesy Nelson, whose two babies have been diagnosed with the genetic neuromuscular disease, isn’t satisfied
Jesy Nelson says ‘we’re so close, yet so far’ after today’s update(Image: ITV)
Mum Jesy Nelson has given her reaction to the important news that Scotland has become the first part of the UK to test newborn babies for Spinal Muscular Atrophy.
The former Little Mix star, 34, says the development is ‘bitter sweet’ as she continues to care for her twin daughters, who were born in May 2025 with the genetic neuromuscular disease. The pair were diagnosed in January, and she has raised awarness about the condition that weakens the muscles by affecting the motor nerve cells in the spinal cord.
The type the tots have is the most common form as well as the most severe. It means that those with it, including Ocean and Story, have a life expectancy that is estimated at less than two years without medical intervention.
The change, announced today in Scotland, has been welcomed by the charity SMA UK and the families it supports but Jesy has taken to Instagram to offer her verdict on the update.
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She posted: “Today my heart feels super heavy. It’s a very bitter sweet moment today knowing 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 are still not testing for it in England.
“To know that my girls’ lives and so many other children in England could look so different if this had of been here for them.” She went on: “But never the less I will keep fighting and pushing for change because nobody should ever have to go through this headache.”
Confirming the news, SMA UK released a statement reading: “We are delighted to share the news that NHS Scotland will add Spinal Muscular Atrophy (SMA) to its newborn screening programme in an evaluative and research capacity, from the 23rd March 2026.
“This marks a hugely positive step forward for babies and families across Scotland and brings the country in line with many others around the world that already screen for SMA at birth. What This Means for Babies in Scotland External funding has supported the purchase of specialist testing equipment for the Scottish Newborn Screening Laboratory in Glasgow.
“As Scotland has a single national screening laboratory, this means every baby born in Scotland will be screened for SMA, around 45,000 babies each year (45,763 live births in 2024). With established clinical pathways and disease-modifying treatments already approved by NHS Scotland, babies identified through screening can receive treatment before symptoms develop. In many cases, this allows children with SMA to follow near-normal developmental pathways, dramatically improving long-term outcomes.”
Jesy continues to share her children’s health issues on social media to keep her followers updated. Before the singer gave birth, she allowed cameras to film her pregnancy. Despite the sad diagnosis, she has revealed she will continue to allow the cameras to roll as their journey goes on.
In a recent Q&A, Jesy said: “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 went on: “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.”
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