The Little Mix star explained how her girls were diagnosed with Spinal Muscular Atrophy in an emotional video earlier this month
18:12, 29 Jan 2026Updated 18:19, 29 Jan 2026
(Image: Sky News)
Jesy Nelson has said her twins’ SMA diagnosis is “a matter of life and death”, adding that she’s “so angry” that it’s taken her experience for the condition to be taken seriously.
The Little Mix star – who explained how her girls were diagnosed with Spinal Muscular Atrophy in an emotional video earlier this month – met with Health Secretary Wes Streeting to demand he rolls out newborn screening for the muscle wasting disease which her daughters have. Jesy has been told by medics her children will likely never walk.
Speaking to Sky News’ The UK Tonight programme with Sarah-Jane Mee, Jesy – who welcomed her daughters in May last year – said: “People are starting to take notice and take it seriously but it never should’ve took for me for it to be taken seriously. That’s the part that makes me feel so angry.
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She said she’s “so angry” that it’s taken her experience for the condition to be taken seriously.(Image: Sky News)
“This isn’t just anything, this is a matter of life and death for someone’s child. Who gets to decide that? Who has the right to decide whether my child is going to be in a wheelchair or not when we’ve literally had three life changing treatments since 2018. The fact it’s still a thing, and we are still having to scream and shout, is just mad to me. “
On This Morning, Jesy struggled to hold back tears as she spoke about the first red-flag signs she spotted in her twin babies after being told they may never be able to walk.
She said: “When I took them home, I was focused on checking their breathing, checking their temperature, I wasn’t focused on checking if their legs were still moving.
“But I remember laying them down on their mat and thinking ‘isn’t their belly an unusual shape’ and they breathe from their belly, and we were like ‘well that’s just because they are premature’ and that’s what’s frustrating.” She also recalled noticing that her twin girls weren’t moving their legs much.
The Little Mix star explained how her girls were diagnosed with Spinal Muscular Atrophy in an emotional video earlier this month(Image: Jesy Nelson Instagram)
Jesy welcomed her twins last year with ex Zion Foster(Image: Jam Press/@?jesynelson)
The singer vented her frustrations as she also recalled healthcare visitors coming round and claiming they were telling her that her babies “are fine and healthy and doing really well”. She added: “It took for my mum to say ‘they don’t move their legs how they should be moving.
“My mum is a worrier, and at the time, I thought that was just mum being mum, but then I thought ‘actually, they don’t move them a lot’. Every day I started to notice movements less and less and less.”
Jesy “dreads to think” what position she’d be in if her Mum hadn’t noticed that her girls weren’t moving as much as they should. She admits it’s one of those things she “constantly” thinks about.
She added: “I have to stop myself from doing it otherwise I’ll drive myself insane. I don’t want people to think that if you’ve got a disability that that it defines you but I will openly say this – if I could have it the other way, I definitely would. Why wouldn’t I, as a mum? Why wouldn’t I want me children to walk and live a fulfilled life?”
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.
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