Jesy Nelson has marked a significant victory in her campaign for improved SMA screening after the Government confirmed a parliamentary debate will take place on the issue.
The 34-year-old singer announced on Friday that a petition calling for Spinal Muscular Atrophy to be added to newborn screening in England will be discussed by MPs on June 22.
The former Little Mix star has been advocating relentlessly for expanded NHS testing since her one-year-old twin daughters, Ocean and Story, were diagnosed with SMA Type 1 earlier this year.
Her campaign has called on the health secretary to override committee guidance and ensure effective treatments become more readily available through the health service.
Jesy Nelson gave birth to Ocean Jade and Story Monroe Nelson-Foster in May 2025 | INSTAGRAMThe twins received their diagnosis in January, but the late detection has had severe consequences for their future.
Due to the delayed identification of the condition, Ocean and Story are unlikely ever to walk and require specialist breathing equipment during the night alongside feeding tubes.
SMA Type 1 is a rare muscle-wasting disease caused by a missing gene that most people carry naturally.
Without timely treatment, the muscles progressively deteriorate and waste away, eventually affecting breathing and swallowing functions.
Jesy Nelson shared some promising news on Instagram
|Ms Nelson has spoken candidly about the grim reality her family faces, though she remains determined to fight for better outcomes.
Last month brought further positive news when Health Secretary Wes Streeting announced that heel prick testing for SMA would be rolled out across England.
The pilot programme, set to begin in October 2026, will see approximately 400,000 newborns screened for the condition.
Currently, the NHS tests babies at around five days old for just 10 treatable conditions, with cystic fibrosis among them.
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A petition calling for SMA to be added to newborn screening in England will be discussed by MPs on June 22
|In correspondence to Ms Nelson and SMA UK chief executive Giles Lomax, Mr Streeting confirmed the screening would commence earlier than originally planned.
He wrote: "I am pleased to confirm that [screening] will now start in October this year rather than January as previously planned."
Celebrating the announcement on Instagram, Ms Nelson declared: "A big step forward for SMA... I am so proud as this is a major milestone for the SMA community."
Ms Nelson has also chosen to continue filming her Prime Video documentary series, viewing it as an opportunity to drive meaningful change.
Jesy Nelson has continued to update fans on her babies' diagnosis | INSTAGRAMThe daily reality of caring for her daughters alongside ex-partner Zion has been gruelling, with Ms Nelson describing the experience as an emotional rollercoaster.
Speaking to Jamie Laing on his Great Company podcast, she expressed optimism that treatment could extend her daughters' lives.
"My girls are the strongest, most resilient babies and I really believe that they are going to defy all the odds," she said.