Jesy Nelson has shared an emotional glimpse into the daily reality faced by her twin daughters, Ocean and Story, as she renewed her campaign for universal screening for spinal muscular atrophy (SMA).
The former Little Mix star, 35, posted a poignant photograph showing the special spinal braces worn by her one-year-old daughters, who were diagnosed with Type 1 SMA earlier this year.
Alongside the image, Jesy wrote: “Just a reminder that future SMA babies’ lives don’t need to look like this! These are Ocean and Story’s spinal braces that they now have to wear every day.”
The singer also urged supporters to attend a parliamentary debate on Monday, June 22, after campaigners successfully pushed for the issue to be discussed by MPs.
Sharing a poster for the event, she added: “I hope to see as many of you there tomorrow. It’s going to be a big day.”
Jesy has become one of the most prominent voices campaigning for newborn SMA screening after revealing the devastating diagnosis affecting her daughters.
Because Ocean and Story were diagnosed late, the twins are expected to face significant physical challenges. They rely on specialist equipment to help with breathing at night and require feeding tubes, with doctors warning they may never walk.
Thanks in part to the campaign backed by Jesy and SMA UK, screening for the condition is set to begin in England in October. However, the singer has spoken out against what she describes as an unfair “postcode lottery”, warning that only around 72 per cent of England will initially be covered.
In an emotional Instagram post ahead of the debate, she wrote: “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 per cent of England.”
She continued: “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!”
Jesy revealed she will attend Parliament alongside SMA UK chief executive Giles Lomax in the hope that MPs will support nationwide screening for all newborns.
Appearing in a video message to fans, the singer became visibly emotional as she reflected on how different Ocean and Story’s lives might have been had they received treatment immediately after birth.
She said: “If they get the treatment from after birth, the treatment is so life-changing, you wouldn’t even know they had SMA. But if they don’t, they will go on to be disabled.”
Fighting back tears, she added: “Why are we playing postcode lottery with children’s lives? This is about our children’s futures. We are playing with children’s lives and it is not okay. It makes me feel so sad that my children’s lives could have looked so different…”
Last month, Health Secretary Wes Streeting confirmed that more than 400,000 babies will begin receiving newborn SMA screening from October 2026, bringing forward plans originally scheduled for a later date.
Jesy has previously spoken candidly about the emotional toll of caring for Ocean and Story, admitting that some days are “really fing s” as the twins undergo demanding medical procedures.
Speaking on Jamie Laing’s Great Company podcast, she explained: “Their muscles are now deteriorating and wasting away, and if you don’t get them treatment in time, eventually the muscles will all just die, which then affects the breathing, the swallowing, everything. And they will die before the age of two.”
Despite the challenges, the singer remains determined to stay hopeful.
She said: “It’s not okay, but it is what it is, and I just have to accept it, and now just try and make the best out of this situation… And my girls are the strongest, most resilient babies and I really believe that they are going to defy all the odds.”
