Jesy Nelson welcomes plans to test newborns for debilitating muscle-wasting condition Spinal Muscular Atrophy

Newborn babies across England will be tested for spinal muscular atrophy (SMA) - a rare condition which causes progressive muscle wastage - from the end of this year, the Department of Health has announced.

The test will be offered as part of the routine heel prick test already carried out on babies shortly after birth.

It's part of an evaluation programme which will inform future recommendations on testing newborns by the UK National Screening Committee.

The condition has been brought to national attention in part by singer and former Little Mix star Jesy Nelson, who announced her twins, Ocean Jade and Story Monroe, had been diagnosed with the condition at the start of this year.

She has said their diagnosis means they are unlikely ever to be able to walk or regain their neck strength.

Nelson welcomed the rollout, calling it "a day of hope".

She said: "After years of campaigning, it means so much to see the heel prick test for SMA begin rolling out from October, with implementation continuing throughout 2027 until every newborn screening laboratory across the UK is offering the test.

"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. Every baby's life matters."

'A hugely important step forward'

Nelson has previously called the screening study "a postcode lottery," flagging that it would "only cover 72% of England".

In an Instagram post last month, she said: "That means some babies won't be screened simply because of where they live. A postcode lottery like that just isn't fair."

Speaking to Sky News' The UK Tonight With Sarah-Jane Mee earlier this year, Nelson said she had taken the twins to the GP three times because they weren't feeding properly but was told: "They are absolutely fine".

She said it was her mum who finally recognised the signs, eventually leading them to a diagnosis and treatment.

Health Secretary James Murray said: "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."

Giles Lomax, chief executive officer of Spinal Muscular Atrophy (SMA) UK, said: "We are delighted to see the confirmation that the remaining six screening laboratories will begin screening from October 2027. This demonstrates a clear commitment to making newborn screening available across England.

"No family should face a postcode lottery when it comes to a condition where every day without treatment can lead to irreversible loss of motor neurons."

Aoife Regan, director of impact and charitable programmes at Great Ormond Street Hospital Charity, said: "Early diagnosis can be life-changing. With effective treatments now available, identifying SMA before symptoms appear gives babies the best chance of timely treatment and can help prevent irreversible disease progression.

"At Great Ormond Street Hospital, teams provide specialist and wraparound care for children with SMA and their families following what is often a devastating diagnosis. Screening has the potential to transform that journey for future families."

Babies in Scotland have been offered the test since March.

What is SMA?

SMA is a rare genetic condition that causes progressive muscle weakness and loss of movement and can affect a child's ability to breathe and swallow. It can leave babies unable to sit up, crawl or walk.

It's estimated that around 70 babies are born with the condition each year in the UK, with SMA often grouped into types based on the age at which symptoms begin and how it affects sitting, standing and walking.

According to the NHS, around 1,150 people in England are living with SMA types one, two, or three.

There is currently no cure for SMA, but early treatment can delay the progressive nature of the illness and help children live longer.

(c) Sky News 2026: Jesy Nelson welcomes plans to test newborns for debilitating muscle-wasting cond