Former Little Mix star Jesy Nelson has been seen in public with her twin daughters for the first time since disclosing their diagnosis with a rare neuromuscular disorder. The 34-year-old singer, accompanied by her mother Janice, took a walk in Essex pushing her eight-month-old babies Ocean and Story in a double pram.
Heartbreaking Diagnosis and Urgent Campaign
Earlier this month, Nelson revealed that her daughters were diagnosed at birth with Spinal Muscular Atrophy Type 1 (SMA Type 1), a rare genetic condition that causes progressive muscle weakness and atrophy. The condition currently requires the twins to receive round-the-clock care, with doctors indicating they may need wheelchairs throughout their lives.
The emotional mother has since launched a powerful campaign to make SMA testing standard for all newborn babies across the United Kingdom. Currently, the heel prick test that could detect SMA is not routinely administered to newborns in the UK, despite the availability of treatments that can dramatically improve outcomes when administered early.
Emotional Meeting with Health Secretary
On Tuesday, Nelson met with Health Secretary Wes Streeting in a deeply moving encounter that left both parties fighting back tears. During their discussion, which was featured on This Morning, Nelson passionately argued for immediate changes to newborn screening protocols.
"No parent should have to go through this," Nelson sobbed as she showed Streeting a video of a child affected by SMA Type 1. "It's madness to me that we are living in a day and age now where we have got treatments that are life changing and SMA is still not part of the heel prick test."
The singer questioned why it required someone with her public platform to bring attention to an issue that families have been "screaming and shouting about for many years." She emphasized that without routine testing, more families would experience the same heartbreak she currently endures.
Government Response and Screening Evaluation
Health Secretary Wes Streeting appeared visibly affected by their conversation, wiping away tears as he responded to Nelson's emotional appeal. He acknowledged that earlier diagnosis could have made a significant difference for her daughters and promised to investigate accelerating the current evaluation process.
The UK National Screening Committee is currently reviewing SMA testing for newborns, with a report expected in January 2028. Streeting committed to exploring whether the evaluation could begin sooner and whether it could include all babies rather than just two-thirds during the trial period.
"I'll be a dog with a bone on this," Streeting vowed, acknowledging that he hadn't fully understood the importance of SMA testing until Nelson's campaign brought it to his attention.
Personal Challenges Amid Public Advocacy
Nelson's public campaigning comes during a period of significant personal upheaval. Sources confirmed this week that she has split from her fiancé, musician Zion Foster, just weeks after revealing their daughters' diagnosis. The couple, who got engaged in September 2025 after three years together, will reportedly focus on co-parenting their twin girls.
A source close to the couple stated: "She and Zion remain friends and are fully focused on their daughters. Their priority continues to be the well-being of their daughters. They are fully united in co-parenting."
Family Support and Moving Forward
Foster publicly expressed his support for Nelson's campaign on Instagram, sharing a self-written poem about accepting their daughters' condition and praising Nelson as a mother. In his caption, he described her advocacy as "the definition of a superwoman" and joined her call for immediate changes to UK healthcare screening.
Nelson previously explained on This Morning that if her twins had been diagnosed earlier through routine testing, she might have had an opportunity to "save their legs." Medical experts confirm that when SMA Type 1 is treated pre-symptomatically at or near birth, the disease can be largely prevented, with many children developing minimal or no symptoms.
The NHS describes spinal muscular atrophy as a rare genetic condition that causes muscle weakness that worsens over time, though medicines and treatments can help manage symptoms. Nelson's campaign highlights the critical gap between available treatments and current screening practices in the UK healthcare system.
As she continues her public advocacy while navigating personal challenges, Nelson remains determined to prevent other families from experiencing the same diagnostic delays that have affected her daughters. Her emotional appeal to government officials represents a significant moment in the ongoing debate about newborn screening protocols and healthcare priorities in the United Kingdom.
