Singer Jesy Nelson has pledged to “shout from the rooftops” to campaign for all babies to get tested for Spinal Muscular Atrophy (SMA), a rare muscle disease, at birth.
The former Little Mix star recently learned her seven-month-old twin daughters have SMA and will “probably never walk,” a heartbreaking reality compounded by the fact that the condition isn’t currently included in routine newborn screening. Nelson shared her story on Wednesday, sparking a renewed debate about early detection and access to life-changing treatments.
“That’s what’s frustrating,” she told ITV’s This Morning. “If this was the card I was always going to get dealt and there was nothing I could do about it, then it’s almost easier for me to accept. But when you know that there is something that can be done about it, and it is life changing to your child, that’s the part that I cannot accept.”
A Race Against Time for Treatment
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Nelson, 34, described how her life “completely changed” after receiving the diagnosis. She explained the urgency of early intervention, emphasizing that SMA treatment is most effective when started before significant muscle damage occurs. She is now advocating for SMA to be added to the NHS newborn blood spot test, which currently screens for ten other conditions at five days old.
“I have this platform, and I almost feel like I’ve got a duty of care to raise awareness about it,” Nelson said. “And a little part of me feels…I don’t know if this is even crazy to say this, I feel selfish to keep this to myself and not potentially save a child’s life.”
The Emotional Toll of a New Reality
The singer shared the emotional weight of adapting to her daughters’ needs, Ocean Jade and Story Monroe Nelson-Foster. She admitted to feeling overwhelmed by the sudden shift in roles.
“It’s just so much to deal with whilst you’re also trying to deal with this horrendous thing that’s just happened,” Nelson said, becoming visibly emotional as she spoke with presenters Cat Deeley and Ben Shephard. “I won’t lie. The part that really gets me is I just want to be their mum, I don’t want to be a nurse. So it’s hard, but…I just want to reiterate that if this is caught from birth, it’s just life changing.”
Hope Amidst a Difficult Diagnosis
Nelson explained that her daughters have already begun receiving treatment—a one-off gene therapy infusion designed to deliver a healthy copy of the gene they lack. While the treatment can halt further muscle deterioration, it cannot restore function to muscles already affected.
“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,” Nelson shared. “But there have been so many stories where parents have been told this, and their children have gone on to do incredible things. So I believe that you’ve just got to manifest this into existence.”
Despite the challenges, Nelson remains optimistic. “They are still smiling. They’re still happy. They have each other, and that’s the main thing that I’m like 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 it’s beautiful. So all I can do is just try my best to be there for them, give them positive energy, keep doing physio.”
Calls for Change and Available Treatments
Health Secretary Wes Streeting acknowledged Nelson’s advocacy on Tuesday, telling ITV News she was “right to challenge and criticise how long it takes to get a diagnosis.” He affirmed his commitment to expanding genomic medicine and improving screening processes.
A life-changing gene therapy drug, Zolgensma, was approved for use by the NHS in 2021. According to the charity SMA UK, the drug delivers a functional gene to the body, but early intervention is crucial to prevent irreversible nerve damage. Scotland will begin routine SMA screening this spring, and the UK National Screening Committee is currently evaluating nationwide implementation.
Nelson is supporting a campaign by SMA UK to include routine screening for SMA in the NHS newborn blood spot test, which currently screens for conditions like cystic fibrosis and sickle cell disease. An NHS spokesperson stated that three new SMA treatments have been rolled out since 2019, benefiting hundreds of children. The NHS is also evaluating the potential of wider genomic sequencing for newborn screening, including SMA.
