Jesy Nelson is celebrating a huge victory for her ongoing battle to raise awareness about spinal muscular atrophy (SMA), as the NHS announces plans to introduce “heel prick” testing for newborns. This groundbreaking decision comes just months after Jesy revealed her twin daughters, Ocean and Story, were diagnosed with SMA Type 1, a devastating condition that causes muscle-wasting and affects their ability to walk and breathe without assistance.
In a heartfelt Instagram post, Jesy shared her pride and joy, writing: “A big step forward for SMA – ISE have announced that SMA screening will begin in England from October 2026. I am so proud as this is a major milestone for the SMA community.” This initiative will test over 400,000 babies across England, a massive step forward for the SMA community, ensuring that more children will have access to early diagnosis and life-changing treatments.
Despite the heartbreaking prognosis for her daughters – who may not live beyond the age of two – Jesy remains focused on her mission to fight for better access to treatment. She’s continuing to film her Prime Video series, offering an intimate look at her life and the challenges she faces while raising her girls. As Jesy said, “When the girls got their diagnosis, we decided to continue filming. It was hard, but we knew it was important to show people what we’re going through.”
The singer has been an outspoken advocate for expanding SMA screening, tirelessly campaigning to make treatment more accessible on the NHS. The new policy comes after mounting pressure from parents and supporters like Jesy, who have shared their own stories of loss and hope.
Jesy’s daughters, Ocean and Story, are currently undergoing daily medical treatments, including breathing equipment and feeding tubes, as part of their care. The emotional toll is undeniable, with Jesy describing some days as “really tough” and others slightly lighter. Yet, despite the odds, Jesy remains hopeful that her girls will defy expectations, stating: “My girls are the strongest, most resilient babies, and I truly believe they will beat the odds.”
Celebrating the news, Jesy took to her Instagram and wrote: ‘A big step forward for SMA, ISE have announced to start screening for SMA in England will now begin’
The singer, 34, revealed in January that her now nine-month-old twins, Ocean and Story, had been diagnosed with SMA Type 1
This breakthrough announcement by the NHS marks a critical moment in the fight against SMA, bringing hope to families who know all too well the challenges of living with this cruel condition. The fight is far from over, but for Jesy and other parents of children with SMA, it’s a step toward brighter days ahead.
