Ex-Little Mix star Jesy Nelson recently announced that her twin daughters have been diagnosed with SMA. Now, she’s calling on parents to campaign for a screening test for newborns — but what could such a test mean for your children?
Ex-Little Mix member Jesy Nelson has recently been in headlines — but unfortunately it’s for a heart-breaking reason.
At the beginning of this year, Jesy revealed that her twin eight-month-old daughters, Ocean and Story, were diagnosed with Spinal Muscular Atrophy (SMA) Type 1.
What is SMA?
“SMA is a genetic disease that causes weakness and wasting,” explains Dr Lucy Hopper, co-founder of Coyne Medical. “It especially affects the muscles used for movement.”
In her upcoming Amazon Prime documentary, Jesy Nelson: Life After Little Mix, which is released on 13 February, Jesy reveals her anxiety around being pregnant due to being diagnosed with TTTS.
TTTS or twin-to-twin transfusion syndrome is a rare pregnancy condition where there’s an imbalance in blood flow — one twin receives too much blood while the other receives less. Despite this diagnosis (and despite giving birth prematurely), Jesy successfully gave birth to two healthy babies and believed everything to be fine, until she began noticing signs of SMA.
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In a matter of weeks after bringing the girls home, Jesy and her family realised that the girls’ legs were gradually moving less — leading to an eventual diagnosis.
But the onus to notice this disease shouldn’t only be on parents, right? Particularly first-time mothers who are sleep deprived and are caring for a new-born/new-borns for the first time.
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Jesy Nelson’s SMA campaign
About five days after babies are born, they’re given a routine panel of blood tests, often called a ‘heel prick test’ — as blood is taken by pricking the baby’s heel with a needle.
This tests for around 10 serious health conditions, including cystic fibrosis. Jesy is campaigning with SMA UK to change this.
SMA is often picked up by parents who see movement or muscle abnormalities, but an earlier diagnosis could vastly change the trajectory of this disease.
Dr Lucy explains: “Screening will lead to earlier diagnosis of SMA. This is crucial. We now have three different medicines available to treat SMA. These drugs don’t just treat symptoms but target the underlying issue and can change the path of the disease.”
This campaign calls for all children in the UK to be tested for SMA as part of the heel prick newborn screening test.
Jesy has met with UK Health Secretary Wes Streeting to discuss expanding this testing for all babies. Dr Lucy adds, “Most European countries already offer SMA screening for new-borns. A pilot study is due to start in Scotland in March 2026.”
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How to get involved in Jesy’s SMA campaign
SMA UK has been advocating for this newborn screening for SMA since around 2013, and have now submitted a proposal to the National Institute for Health and Care Research (NIHR) that details a roadmap for how this could be rolled out across England.
“Newborn screening gives families answers from day one and ensures babies can access life-changing treatment at the earliest possible moment. That’s why it’s not just important, it’s essential and SMA UK will do all we can to ensure this happens,” says Giles Lomax, the CEO of SMA UK.
Jesy posts regular updates on her campaign progress via her Instagram page.
Find more information and support at Spinal Muscular Atrophy UK
Feature image: WikiCommons
