The former Little Mix star’s daughters, Ocean and Story have the rare muscle-wasting condition, and on Monday she takes her campaign for mandatory testing to parliament
Jesy Nelson has made an emotional plea ahead of a landmark debate in Parliament as she continues her fight to ensure every newborn baby in England is screened for spinal muscular atrophy (SMA).
The debate follows the Mirror’s campaign with SMA UK calling for spinal muscular atrophy to be added to the NHS heel-prick test offered to every newborn. Jesy has become one of the campaign’s leading voices after her one-year-old twin daughters, Ocean and Story, were diagnosed with SMA Type 1, a rare muscle-wasting condition.
The former Little Mix star, 35, will attend Westminster on Monday (22 June) alongside SMA UK chief executive Giles Lomax as MPs debate the petition, which has attracted more than 150,000 signatures.
The campaign has already helped secure a major breakthrough after the Government confirmed newborn SMA screening will begin from October. However, Jesy has warned that there is still more work to do.
Sharing an emotional Instagram post, 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% 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.”
She urged supporters to contact their MPs ahead of the debate, adding: “We’re hoping this debate will help push for screening to be available for every newborn across England.”
Fighting back tears in an accompanying video, Jesy reflected on how different her own daughters’ lives could have been had screening been available when they were born.
“I know some of you will know I have been trying to get SMA as part of the heel prick test here and because of you guys the signatures got over 150,000,” she said.
“And because of that it is going to be debated in Parliament this Monday, which is just crazy because we did that. This has never got this far before.”
Explaining why the campaign matters so deeply, she continued: “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.
“It is being rolled out in October but only in certain parts of England. 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.”
Becoming visibly emotional, Jesy added: “It makes me feel so sad that my children’s lives could have looked so different…”
The Government has announced the first phase of newborn SMA screening will launch in October, with around 400,000 babies expected to be tested across England. Campaigners, however, say limiting the rollout to some areas risks creating a “postcode lottery”, with babies potentially missing out on early diagnosis simply because of where they are born.
The NHS currently screens newborn babies for 10 treatable conditions using the routine heel-prick blood test carried out when they are around five days old. Campaigners hope SMA will eventually become a permanent part of that national screening programme.
Speaking when launching the Mirror‘s campaign with SMA UK, Jesy said: “I’m really proud to be working alongside the Mirror and SMA UK on this campaign and launching this petition. This is something that means a lot to me personally, and I’m passionate about using my platform to raise awareness, support families affected, and help drive real change. Partnering with organisations who care so deeply about this makes it even more special to be part of.”
Jesy has previously spoken candidly about caring for Ocean and Story, describing the daily medical procedures they undergo as “full-on” and admitting some days are “really f***ing s***”. Despite the challenges, she has remained hopeful that the treatment they are now receiving will help them “defy all the odds”, while continuing to campaign so future families can benefit from an earlier diagnosis.
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