Mirror reveals 33 babies are being left needlessly paralysed every year because they are not given simple £5 blood test at birth for spinal muscular atrophy
20:17, 07 Jan 2026Updated 22:17, 07 Jan 2026
Jesy before devastating diagnosis(Image: INSTAGRAM)
The Mirror is today launching a campaign to demand no more babies are left needlessly paralysed by a devastating muscle wasting disease.
Pop star Jesy Nelson has described how her twin babies gradually lost the use of their legs in the first few weeks of life before they were belatedly diagnosed and treated. The former Little Mix star has highlighted how the NHS does not have a simple blood test for spinal muscular atrophy (SMA) for all newborns.
First time mum Jesy said she will “never accept” that “we could have saved their legs” before they were diagnosed with the severe Type 1 form of SMA, which sees neurons die off in the first weeks of life.
Jesy in hospital before her twins were diagnosed with SMA(Image: ITV)READ MORE: What is Jesy Nelson’s petition and how babies can be saved by ‘horrible’ diseaseREAD MORE: Jesy Nelson in tears as she says ‘missed symptoms cost twin girls their legs’
Gene therapies can now prevent newborns with SMA being left paralysed – but only if administered at birth before irreversible damage has occurred. Speaking during a tearful appearance on ITV’s This Morning, Jesy said: “If these were the cards I was always going to be dealt and there was nothing I could do about it then it’s almost easier to accept. But when you know there is something that could be done about it and it is life changing for your child, that’s the part that I cannot accept.
“That’s what’s alarming when you have healthcare visitors coming round and they are saying ‘they’re fine, they’re doing really well’. It took my mum to say: ‘They don’t move their legs how they should be moving.’
Jesy on ITV’s This Morning yesterday(Image: Ken McKay/ITV/Shutterstock)
“Every day I would start to see it gradually less and less. And it makes me so sad when I watch back the videos now. They are moving their legs, then in week two and three it gets less and less and then after a month it just stops.
“That’s how quick it is – and that’s why it is so vital to get treatment from birth… it stops any of the muscles that are still working from dying but any that have gone, you can’t regain them back.”
Jesy’s post on Instagram after the birth
The 34-year-old singer, who gave birth to twins Ocean Jade and Story Monroe Nelson-Foster prematurely in May with fiance Zion Foster, announced on Sunday that the pair are unlikely to ever be able to walk after being diagnosed with SMA.
If babies do not have an older sibling with SMA they are currently usually diagnosed until parents repeatedly present to the NHS to report that their baby is not lifting its head or moving.
The Mirror revealed in 2024 that an estimated 50 babies a week in the UK are currently being born with the muscle wasting condition, which in almost all cases is not being diagnosed at birth. Pharmaceutical firm Novartis, which makes drugs to combat SMA, estimates 33 of these will be left needlessly paralysed because they were not screened at birth.
Jesy has opened up about her devastating diagnosis(Image: ITV)
We are demanding the Government immediately adds a £5 blood test for spinal muscular atrophy (SMA) to the newborn heel prick test – something which has been done by most other developed nations. When diagnosed late children typically require a wheelchair, breathing support, are fed through a pipe directly into their stomach and need a nurse at their bedside overnight to check they don’t stop breathing.
Jesy said: “We’ve been told that they will probably never walk. They’ll probably never regain their neck strength. They are going to be in wheelchairs. There’s been so many stories where parents have been told this, and then their children have gone on to do incredible things so I believe that you’ve just got to manifest this into existence.
“They are still smiling. They’re still happy. They have each other and that’s like the main thing that I’m so grateful for because they could be doing this by themselves, but they’re twins, and they’re going through this together and I think that’s beautiful. All I can do is just try my best to be there for them, give them positive energy, keep doing physio.”
Jesy has been updating her Instagram followers throughout her motherhood journey(Image: Jesy Nelson/Instagram)
The Mirror has been highlighting the issue of SMA since 2021 when we reported how a groundbreaking gene therapy being introduced on the NHS called Zolgensma appeared to be a cure. The one-off injection carries a healthy copy of the SMN1 gene to the brain and halts the die off of nerve cells.
We raised the lack of newborn screening for SMA in June 2024 in our interview with the father of five-month-old Arthur Morgan – who was the first NHS patient to get Zolgensma. Zolgensma is now one of three treatments now available on the NHS which can halt the death of neurons from the point it is administered. Scotland has announced it will start screening babies for SMA from the spring, but the test is not currently available for newborns elsewhere in the UK.
Jesy posted a video of one of her twins’ breathing(Image: ITV)
Giles Lomax, chief executive of the charity SMA UK, said: “Newborn screening saves lives. For conditions like spinal muscular atrophy, early diagnosis is critical. It can mean the difference between irreversible muscle damage and a child growing up with far better health and independence.
“Newborn screening gives families answers from day one and ensures babies can access life-changing treatment at the earliest possible moment. Time is neurons. That’s why it is not just important, it’s essential and SMA UK are doing all we can to ensure this happens.”
Nelson rose to fame after winning The X Factor in 2011 with Little Mix alongside Leigh-Anne Pinnock, Perrie Edwards and Jade Thirlwall. She left the band in December 2020 after nearly a decade together, and has since released two songs as a solo artist: Boyz, which featured US rapper Nicki Minaj, in 2021 and Bad Thing in 2023.
Rob Hastings, Novartis UK Chief Medical Officer said: “We would like to express our sympathy to Jesy and her family and praise her for bravely sharing her children’s experience with spinal muscular atrophy (SMA), which will no doubt raise awareness of this devastating condition.
“Cases like hers highlight the importance of newborn screening for SMA. We know that diagnosing SMA before symptoms appear may give babies a chance at avoiding irreversible damage and a lifetime of disability. We strongly urge the Government to expand newborn screening for SMA across the UK, to bring us in line with the majority of countries in Europe where SMA is routinely screened for at birth.”
Have your children been affected by SMA? Email martin.bagot@mirror.co.uk to tell us your story.