Image source, PAAll newborn babies in England will be tested for the genetic disease spinal muscular atrophy (SMA), as part of a major study.
Former Little Mix singer Jesy Nelson has been campaigning for screening since her twin girls were diagnosed with the condition.
Nelson described the announcement as a “victory for every family” affected by SMA.
Early treatment for SMA can transform babies’ lives.
SMA causes muscle weakness. This affects movement such as the ability to walk, but it also affects the muscles needed to breathe and to swallow.
In the most severe cases it is fatal before the age of two.
However, there are pioneering gene therapies that can correct the genetic defect that causes SMA.
They need to be given before symptoms emerge as they cannot undo any damage that has already been done – hence the call for testing newborns.
Earlier this year, Nelson revealed she had been told her daughters Ocean Jade and Story Monroe Nelson-Foster would “probably never walk”.
The singer recently posted on social media about how her twins needed to wear spinal jackets and foot splints in the middle of a heatwave.
And in a trailer for her forthcoming documentary Jesy Nelson: Life Changing on Prime Video, she said: “I feel like I’m going to feel heartbroken for the rest of my life.”
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There is already screening for SMA in babies in Scotland. Screening will become available in most of England from October 2026, as part of a study, with a full expansion by October 2027.
Earlier plans – which would have seen screening available to only 72% of England – caused controversy.
The test uses a sample of blood taken in a heel prick shortly after birth.
Nelson said: “After years of campaigning, it means so much.
“Today is a day of hope. Knowing that future families will have access to early diagnosis and the opportunity for the best possible outcomes is something I’m incredibly proud to have supported.
“This is a victory for every family affected by SMA. Whilst it can’t change the future of our children, I know it marks the beginning of a brighter future for future SMA families.”
Hundreds of thousands of babies are expected to be screened for SMA as part of the study, which will be led by scientists at the University of Oxford.
That will help the UK National Screening Committee make a final decision on whether SMA testing should become a permanent fixture.
James Murray, the health secretary, said he was “in awe” of campaigners who had worked to raise awareness of SMA.
“No parent should have to watch their child lose the ability to move or breathe, knowing that earlier treatment could have made all the difference,” Murray said.
Image source, Charlie BrownCharlie Brown from Blackwood, Caerphilly, whose four-year-old daughter Dani was diagnosed with SMA when she was 13 months old, hopes Wales will follow England’s lead.
“Dani’s life is a struggle in every aspect. No day is easy for her.
“No child should have to go through that. And if there’s something out there that can stop that, why would you not do it?”
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