Jesy Nelson has a new mission, and it is bigger than a comeback single.
After learning her seven-month-old twin daughters have spinal muscular atrophy, a rare genetic condition that weakens muscles, the former Little Mix star is now pressing for a change that would hit every new parent in the UK. She wants SMA added to newborn screening, so families find out at birth, not months later when symptoms have already started stealing strength.
Her rallying cry is simple and personal. She says she is ready to “shout from the rooftops”. The question is whether the system that decides which conditions make the screening list will move quickly enough for the next wave of babies.
A TV sofa confession that turned into a policy demand
Nelson spoke about her daughters Ocean Jade and Story Monroe Nelson-Foster on ITV’s This Morning, describing the shock of diagnosis and the scramble to learn a new kind of parenting. The BBC reported her comments and her plan to campaign for newborn testing.
“That’s what’s frustrating,” Nelson said on the programme. “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.”
Then she drew the line that turns a family crisis into a public fight. “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.”
She told viewers she has had to rapidly learn how to look after her twins while trying to just be their mum, not their clinician. “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.”
Many of you will have seen Jesy Nelson’s video about her twin girls being diagnosed with SMA type 1. She speaks passionately about making the video to raise awareness of the signs of the condition and the importance of newborn screening. 1/8 pic.twitter.com/Jkjcx93qiM
— Muscular Dystrophy UK (@MDUK_News) January 5, 2026
What SMA is, and why timing is everything
Spinal muscular atrophy is typically caused by changes in a gene called SMN1, leading to the loss of motor neurons and progressive muscle weakness. In plain terms, muscles that should keep getting stronger can weaken over time, affecting movement, swallowing, and breathing in more severe cases. Health services and major patient charities describe SMA as rare but serious, and they stress that earlier treatment can protect remaining motor function.
That “early” part is the entire campaign. Nelson said looking back at early videos made her realize she could now spot signs she did not understand at the time. “That’s how quick it is,” she said, arguing this is why detection at birth matters.
The stakes are painfully concrete in her account. She said doctors have told her the girls will “probably never walk” and may need wheelchairs, while also noting that prognoses can vary and that some families have been told bleak things only to see their children progress further than expected with treatment and support.
The treatment exists, but it cannot reverse what is already lost
Nelson said her daughters have received a one-off infusion treatment. She described it in genetic terms. “It essentially puts the gene back in their body that they don’t have,” she said. “It stops any of the muscles that are still working from dying. But any that have gone, you can’t regain them.”
This is the dilemma that drives the screening argument. Several SMA treatments aim to preserve motor neurons and improve outcomes, especially when started before significant symptoms develop. The earlier a baby is identified, the earlier clinicians can assess treatment options and begin care plans, including physiotherapy and ongoing monitoring.
Nelson’s description also cuts through a common misunderstanding about miracle medicines. Even with high-profile gene-based therapies, treatment is often framed by specialists as an urgent race against time, not a total rewind.
The UK screens newborns, just not for SMA
The UK already has a well-established newborn blood spot screening programme, commonly known as the heel prick test, which checks for a set list of conditions shortly after birth. The point is to catch certain serious disorders early, before irreversible harm occurs.
But SMA is not currently included in the UK’s routine newborn screening list, which is why Nelson’s family story lands in a politically awkward place. She is not describing a hypothetical improvement. She is describing a gap that, in her view, cost her daughters time.
Decisions about adding conditions are typically guided by evidence reviews and national screening bodies, weighing benefits, accuracy, practical rollout, and treatment pathways. Advocates counter that SMA has a growing evidence base for better outcomes when treated pre-symptomatically, and that other countries have already moved toward newborn screening for SMA.
In the United States, for example, SMA was added to the federal Recommended Uniform Screening Panel in 2018, a benchmark many states use for newborn screening policies. That does not automatically solve implementation questions in the UK, but it does underline Nelson’s core point. Screening for SMA is not a science fiction wish. It exists.
Celebrity advocacy meets a system that moves on evidence, not volume
There is a reason health campaigners chase celebrity allies. A single interview can do what years of petitions struggle to do, which is to make a technical policy decision feel like a kitchen-table issue.
Nelson’s advantage is visibility, and her disadvantage is the same. Critics of celebrity campaigns often argue that screening decisions must be protected from emotion and made strictly on evidence, because screening is not risk-free. False positives can cause distress. False negatives can create false reassurance. Health systems also need capacity to confirm diagnoses quickly and deliver treatment without delay.
Supporters reply that none of those concerns negate the moral pressure of preventable harm. If early treatment can change outcomes, then months of delay are not just administrative. They are clinical.
Nelson framed her own emotional logic as a practical demand: detect it from birth, treat from birth, and spare families the regret of replaying baby videos and wondering what they missed.
Why people care, even if they have never heard of SMA
This is not only a story about one family, or one celebrity. It is a story about what the UK considers worth catching early, and what it is willing to pay attention to before children show symptoms.
For parents, the fear is not just the diagnosis. It is the idea that you could have had an answer sooner, and that sooner might have mattered.
For policymakers, there is a different tension: screening decisions create long-term obligations. Add a condition, and you must fund accurate testing, confirmatory diagnostics, specialist care pathways, and equitable access across regions.
For the public, Nelson’s story translates the debate into a single sentence almost anyone understands. “I just want to be their mum,” she said.
What to watch next
Nelson’s pledge to campaign puts pressure on the UK’s screening decision-making ecosystem, whether through formal reviews, renewed lobbying by patient groups, or political interest sparked by public attention. The next steps that matter are not viral clips, but documents: updated evidence assessments, policy recommendations, and any commitments to pilots or expansion.
In the meantime, Nelson says her focus is on daily care and staying positive about her daughters’ future. “They are still smiling. They’re still happy,” she said, adding that the twins “have each other”.
Her campaign message ends where her parenting begins: catch it at birth, because after that, time does not come back.
