Jesy Nelson has shared an emotional moment of pride after a major NHS decision that could change the future for thousands of families — following the heartbreaking diagnosis of her twin daughters.
The former Little Mix star, 34, revealed earlier this year that her nine-month-old twins, Ocean and Story, had been diagnosed with SMA Type 1 — a rare and severe muscle-wasting condition. The late diagnosis means the girls may never walk and now rely on specialist breathing equipment and feeding tubes, with doctors warning the condition can be life-limiting.
But in a powerful turn, the NHS has now confirmed plans to introduce ‘heel prick’ screening for spinal muscular atrophy in newborn babies across England — a move long campaigned for by Jesy and the SMA community.
Health Secretary Wes Streeting announced that more than 400,000 babies will be screened from October 2026, marking a huge shift in early detection efforts.
Reacting to the news, Jesy took to Instagram to celebrate what she called a turning point. She said it was “a big step forward for SMA,” adding that screening in England will now begin in October 2026 and that she feels incredibly proud as it marks a major milestone for the SMA community.
The announcement follows mounting pressure on the government to expand screening access, after previous recommendations had delayed wider rollout. Now, early detection could allow babies to receive life-saving treatment far sooner.
Jesy has been one of the most vocal campaigners for change, driven by her own painful experience after Ocean and Story’s diagnosis came too late for early intervention.
Despite the devastating prognosis — with SMA Type 1 often limiting life expectancy — Jesy has continued to speak out and document her journey, determined to raise awareness.
She recently revealed she chose to keep filming her Prime Video series even after the diagnosis, explaining that there had to be a reason for sharing their story. She said that as difficult as it was, they decided to continue because they wanted to make the best out of the situation and create something meaningful from it.
The reality of caring for her daughters, however, remains incredibly intense. Jesy previously admitted the daily medical procedures leave her feeling as though she’s hurting them, describing moments where her babies cry and scream during treatment.
She explained that every day is overwhelming and that while she can talk about it, it’s impossible to fully capture just how intense it truly is.
Opening up further, Jesy described SMA as a condition where muscles gradually waste away due to a missing gene, affecting everything from movement to breathing and swallowing. Without timely treatment, the disease can be fatal in early childhood.
Still, she refuses to give up hope.
She said that while the situation is incredibly hard, she has come to accept it and is focused on making the best out of it. She added that her daughters are the strongest, most resilient babies, and she truly believes they can defy the odds.
With the NHS now taking action, Jesy’s fight is no longer just personal — it’s becoming a national turning point that could save countless lives.
