Jesy Nelson Reveals Twins' Daily Struggle with Spinal Braces
Jesy Nelson has shared a glimpse at her twin daughters' reality as she issued an emotional plea ahead of a parliamentary debate on newborn screening for spinal muscular atrophy (SMA). The former Little Mix star posted a photograph of her daughters' spinal braces on Instagram Story, writing: "Just a reminder that future SMA babies' lives don't need to look like this! These are Ocean and Story's spinal braces (they) now have to wear every day."
Campaign for Newborn Screening Gains Momentum
Nelson revealed in January that her twins, Ocean Jade and Story Monroe Nelson, aged 13 months, had been diagnosed with SMA Type 1, a rare genetic condition causing progressive muscle weakness. She launched a petition that gathered more than 150,000 signatures, leading to the announcement that SMA screening would be rolled out as part of in-screening evaluations (ISE) from October 2026, rather than the planned January 2027 launch.
In an emotional Instagram video, the 35-year-old said: "We have had some amazing news that screening is due to start in October this year, which is a huge step forward. But there’s still a big problem, it will only cover 72% of England. That means some babies won’t be screened simply because of where they live. A postcode lottery like that just isn’t fair. Every baby deserves the same chance, every baby’s life matters."
Westminster Debate and Call to Action
Nelson called the limited roll-out "playing with children’s lives and that is not ok", adding "it makes me so sad to think that my children’s lives could’ve been so different". She will attend a debate in Westminster on her petition on Monday (June 22) alongside Giles Lomax, chief executive of charity SMA UK, and urged supporters to join her for a photo at 5pm. She said: "No baby should miss out because of their postcode. Let’s keep fighting until every newborn has the same opportunity."
An NHS spokesperson said: "Screening for spinal muscular atrophy will begin from October using newborn screening laboratories that already have suitable equipment in place, as part of an evaluation requested by the UK National Screening Committee. The NHS is exploring how this could be extended to the rest of the country to provide further evidence for the committee on whether testing for this condition should be a routine part of the bloodspot screening programme offered for every newborn baby."
