Former Little Mix star Jesy Nelson has spoken with raw emotion about what she describes as the heartbreaking reality of spinal muscular atrophy testing delays in the United Kingdom. The singer, whose twin daughters Ocean Jade and Story Monroe were diagnosed with SMA type one, has become a passionate campaigner for universal newborn screening.
The Critical Window for SMA Treatment
Spinal muscular atrophy is a genetic condition that causes progressive muscle weakness, affecting breathing, swallowing, and motor skills. Prior to 2019, babies diagnosed with the most severe form, SMA type one, often did not survive beyond their second birthday. Those with milder type two typically faced life in wheelchairs alongside multiple surgeries and respiratory complications.
However, medical advancements over the past five years have transformed the prognosis. Treatments now exist that can halt the disease's progression when administered early enough. The crucial factor is timing - interventions must begin within the first weeks, or even days, of life to prevent irreversible nerve damage.
The UK's Testing Gap
Currently, the NHS does not include SMA in its standard newborn heel prick test, meaning many infants receive their diagnosis too late for optimal treatment. This testing gap has prompted campaigners and senior medical experts to push for urgent policy changes.
Jesy Nelson has joined The Mirror's campaign calling for all UK babies to be screened for SMA at birth. The proposed addition would cost approximately £5 per test but could prevent lifelong disability and significantly reduce long-term healthcare costs.
Jesy's Personal Struggle
Speaking on Jamie Laing's Great Company podcast, Nelson opened up about the emotional toll of her daughters' diagnosis. "They're doing as good as they can be right now," she shared. "The thing is with SMA, it's like everything is so uncertain. That's the part that can drive you crazy because you can really go down a dark hole."
The singer revealed that medical professionals have told her that her twins will never walk, but she maintains hope through what she describes as "manifestation" and celebrating small victories. "I'm going to do everything in my power to give them the best opportunity possible to be able to walk," she stated. "But even if they don't, it doesn't define who they are."
The Financial and Human Cost
Nelson expressed particular frustration about what she sees as a false economy in the current system. "The part that really breaks my heart is that it costs so much more than what the NHS are going to fund out for all the equipment the child then has to have," she explained.
She described her own experience of receiving specialized equipment for her daughters every two weeks, highlighting the substantial ongoing costs of managing SMA without early intervention. "Who gets to decide whether your child will walk or not?" she questioned emotionally.
The singer recalled a powerful example of two sisters affected differently by testing timing - one who uses a wheelchair after late diagnosis and treatment, while her sister, who received early intervention, can walk and participate in gymnastics.
The Campaign for Change
The Mirror's campaign emphasizes that early detection through the heel prick test could enable treatment before irreversible damage occurs. "It will detect whether they have SMA and what type and how severe it is," Nelson explained. "If they've got that diagnosis, it's about getting treatment as soon as possible. This treatment is life changing."
She summarized the stark choice facing families: "It's literally the case of your child being in a wheelchair or your child being able to walk if you get the treatment early enough."
As the campaign gains momentum, Nelson's emotional testimony has brought renewed attention to the urgent need for SMA screening within the NHS newborn testing programme, potentially affecting thousands of UK families annually.
