Former Little Mix star Jesy Nelson has spoken out with raw emotion about her twin daughters' diagnosis with Spinal Muscular Atrophy (SMA), describing the situation as "a matter of life and death" and expressing profound anger that it required her personal tragedy to bring attention to the condition.
Emotional Plea to Health Secretary
In a powerful intervention, Nelson recently met with Health Secretary Wes Streeting to demand urgent action on newborn screening for the muscle-wasting disease that has affected her children. The singer, who welcomed her daughters in May last year, revealed that medical professionals have told her the girls will likely never walk without intervention.
'It Never Should Have Took Me'
Speaking exclusively to Sky News' The UK Tonight programme with Sarah-Jane Mee, Nelson voiced her frustration at the system's failure. "People are starting to take notice and take it seriously but it never should've took for me for it to be taken seriously," she explained. "That's the part that makes me feel so angry."
The singer emphasised the gravity of the situation, stating: "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."
Missed Early Warning Signs
During an emotional appearance on This Morning, Nelson struggled to contain tears as she recalled the initial signs she observed in her babies. "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," she confessed.
Nelson described noticing her twins' unusual belly shape and reduced leg movements, initially attributing these observations to their premature birth. "That's what's frustrating," she added, highlighting how easily such crucial symptoms can be overlooked.
Healthcare Visitors' Reassurances
The singer revealed her growing concern as healthcare visitors repeatedly assured her that her babies were "fine and healthy and doing really well." It was only when her mother intervened that proper attention was given to the situation.
"It took for my mum to say 'they don't move their legs how they should be moving,'" Nelson recalled. "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."
Campaign for Newborn Screening
Nelson's experience has fueled her advocacy for including SMA testing in the NHS newborn heel prick test, a simple procedure that could identify the condition early and allow for treatment before irreversible nerve damage occurs. Most developed nations already screen for SMA at birth, making the UK's current position increasingly difficult to justify.
The Mirror newspaper is currently campaigning for this £5 check to be implemented, arguing that early detection could effectively cure babies of the condition if treated promptly in their first weeks of life.
A Mother's Honest Reflection
Nelson offered a candid perspective on her daughters' future, stating: "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 my children to walk and live a fulfilled life?"
The singer admitted she "dreads to think" what might have happened without her mother's intervention and constantly reflects on what might have been different with earlier diagnosis and treatment.
