Ex-Little Mix singer Jesy Nelson met Wes Streeting in Parliament to demand newborn screening for spinal muscular atrophy (SMA) – and the Health Secretary says the star will give ‘hope and reassurance’ to others
17:30, 19 Jan 2026Updated 22:34, 19 Jan 2026
Jesy Nelson is confronting Wes Streeting over the lack of newborn screening for SMA in the UK(Image: )
Health Secretary Wes Streeting has said it was a ‘privilege’ to meet ex-Little Mix star Jesy Nelson and praised the singer for sharing her personal experience
Jesy Nelson met Mr Streeting to demand he rolls out newborn screening for the muscle wasting disease which her twin babies have. The devastating diagnosis of spinal muscular atrophy (SMA) which means her children will likely never walk.
The Mirror is campaigning for a simple £5 check for SMA to be added to the NHS newborn heel prick test – so babies can be treated and effectively cured before irreversible nerve damage is done in the first weeks of life. Most developed nations already test for SMA at birth.
Mr Streeting said: “It was a privilege to meet Jesy and hear first-hand about her family’s experience. It takes real bravery to share something so personal, and I have no doubt that by doing so she’ll give hope and reassurance to other families facing the same fears.”
READ MORE: Jesy Nelson’s twins praised as ‘two little warriors’ in fiance’s touching poem
Jesy with Zion and their twins(Image: Jesy Nelson Instagram)
He added: “Jesy made a powerful case for doing more on screening, and she’s given us a lot to think about. We are making progress. The UK National Screening Committee has recommended a large-scale study into newborn screening for SMA and as part of a trial in the NHS, hundreds of thousands of babies will be screened for SMA.
“There are now more treatments available for spinal muscular atrophy than ever before, and we are seeing children with SMA not just surviving but thriving.”
It follows reports Jesy has split with fiance Zion Foster, who is the father of twins Ocean Jade and Story Monroe.
Jesy was joined by the charity SMA UK in her meeting with Mr Streeting where they stressed the devastating consequences of a late diagnosis. Part of the meeting was filmed and will be aired on ITV ’s This Morning on Tuesday.
Health Secretary Wes Streeting said it was a ‘privilege’ to meet Jesy Nelson(Image: PA)
Speaking earlier this month after Jesy Nelson went public with her twins’ diagnosis, Mr Streeting said: “My heart goes out to Jesy Nelson and I think the way she has spoken about what must be an unimaginably frightening situation has been commendable. She’s challenged us to go further on screening, and she is right to do so.
“Where I think Jesy Nelson is right to challenge and criticise is how long it takes to get a diagnosis, and there is screening available, and that’s why I’m determined to look not just at screening for SMA, but to make much better use of genomic medicine.”
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Pharmaceutical firm Novartis estimated 33 UK babies every year are left in a wheelchair because they are being diagnosed too late.
Zolgensma is a one-off gene therapy which saves a baby’s ability to sit, crawl, walk as well as to breath and eat unaided.
The Mirror is campaigning for all babies to receive the £5 SMA heel prick test(Image: )
It was made available on the NHS in 2021 and is effectively a cure if administered before muscle neurons have died off in the first weeks and months after birth.
The injection, manufactured by Novartis, targets SMA’s genetic root cause by replacing the function of the missing or non-working SMN1 gene with a new, working copy of the gene.
Jesy before sharing the devastating diagnosis(Image: INSTAGRAM)
Rob Hastings, chief medical officer at Novartis UK, said: “We would like to express our sympathy to Jesy and her family and praise her for bravely sharing her children’s experience with SMA. 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.”
When diagnosed late, SMA children with the more severe Type 1 form 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.
READ MORE: Wes Streeting praises Mirror campaign demanding baby test after Jesy Nelson heartbreak
First time mum Jesy previously told ITV’s This Morning that she will “never accept” that “we could have saved their legs” before her twins were diagnosed. She 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.
Jesy in hospital before her twins were diagnosed with SMA(Image: ITV)
“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.’
“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.”