Ex-Little Mix singer Jesy Nelson has met Health Secretary Wes Streeting at his office in Parliament to demand newborn screening for spinal muscular atrophy (SMA)
Jesy Nelson has met Wes Streeting to demand he rolls out newborn screening for the muscle wasting disease which her twin babies have.
The former Little Mix singer met the Health Secretary at his office in Parliament to discuss 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.
It follows reports Jesy has split with fiance Zion Foster, who is the father of twins Ocean Jade and Story Monroe.
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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.
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.
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.
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.
“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.”