Jesy Nelson Voices Fury Over Missed SMA Symptoms in Twin Daughters
Former Little Mix singer Jesy Nelson has launched a heartfelt critique of the UK healthcare system after medical professionals repeatedly failed to identify early symptoms of spinal muscular atrophy (SMA) in her twin daughters. The 34-year-old artist, who welcomed Ocean Jade and Story Monroe Nelson-Foster prematurely last May, revealed her profound anger during a candid television interview, describing the oversight as "worrying" and potentially life-threatening.
A Mother's Intervention Proves Crucial
In an emotional appearance on Sky News' The UK Tonight programme, Nelson disclosed that her mother, rather than healthcare visitors or GPs, first noticed concerning signs when the twins were six months old. Despite regular medical check-ups, the characteristic lack of leg movement associated with the rare genetic condition went undetected by professionals. "Thank God for my mum," Nelson stated tearfully, "because I dread to think what position I'd be in now if my mum hadn't have said anything to me."
The Devastating Reality of SMA Diagnosis
The singer shared that doctors have informed her the twins will "probably never walk" or regain full neck strength, likely requiring wheelchairs for mobility. This diagnosis came after what Nelson described as "the most heartbreaking time of my life," compounded by her recent separation from partner Zion Foster. She emphasised the urgency of the situation, revealing she was told that without immediate treatment, her daughters could have died.
Campaigning for Routine Newborn Screening
Nelson is now spearheading a campaign to include SMA screening in the UK's routine newborn heel prick test, arguing that earlier detection could prevent similar family tragedies. "I will not stop on my socials talking about it," she declared. "Trying to do as much TV... I've got to stay noisy." The singer believes that had she seen someone else's experience earlier, she might have recognised symptoms sooner in her own children.
Healthcare System Under Scrutiny
The former girl band star expressed particular frustration that three life-changing SMA treatments have been available since 2018, yet diagnosis delays persist. "Who has the right to decide whether my child is going to be in a wheelchair or not?" she questioned. "The fact that it's still a thing and we're still having to scream and shout about it is just mad to me." Nelson acknowledged that while disability doesn't define a person, she would "definitely" choose for her children to walk if possible.
Public Advocacy Amid Personal Challenges
Despite her personal struggles, including her recent separation, Nelson remains committed to raising awareness. During an appearance on This Morning last month, she broke down while discussing her daughters' condition, stating she feels a "duty of care" to share her story publicly. "It feels selfish to keep this to myself and not potentially save a child's life," she explained, while thanking fans for their "outpouring of support and beautiful messages."
Nelson's campaign highlights ongoing concerns about rare disease detection in the UK healthcare system, as she continues to navigate the challenges of parenting twins with SMA while advocating for systemic change.
