Former Little Mix singer Jesy Nelson fought back tears during an emotional appearance on ITV's This Morning as she detailed the first warning signs that her twin babies had a rare genetic condition.
The Heartbreaking Diagnosis
The first-time mum revealed that her eight-month-old twins have been diagnosed with Spinal Muscular Atrophy (SMA), a progressive muscle-wasting disease. Speaking to hosts Ben Shephard and Cat Deeley on Wednesday, 7th January 2026, Jesy explained she decided to go public to raise crucial awareness about the condition.
She shared that her twins, who were born prematurely, have now received a one-off gene infusion treatment. "It stops any of the muscles that are still working from dying. But any that have gone you can’t regain those back," she stated. Medical professionals have told her the children will likely never walk or regain full neck strength and will probably use wheelchairs.
The Early Red Flags Jesy Spotted
Nelson recounted the initial symptoms she noticed but initially dismissed due to advice about premature development. "I remember laying them down on their mat and thinking ‘isn’t their belly an unusual shape’," she said, noting they breathed from their bellies. She also observed that her daughters were moving their legs less and less over time.
"Every day I started to notice movements less and less and less," Jesy explained. Reviewing old videos, she saw a rapid decline: "They are moving their legs and then week two, week three it gets less and less and after a month it just stops." She credited her own mother for persistently raising concerns about their leg movements.
A Campaign for Change and NHS Screening
A key focus of Jesy's campaign is the push for SMA to be included in the routine NHS heel prick test for newborns. This simple test at birth can detect the condition, enabling early, life-changing intervention. It is not currently part of standard screening in the UK.
"If I had seen someone else’s video, maybe, just maybe, I could have prevented this from happening," she said, explaining her decision to share her family's story publicly. "I have this platform and I feel a duty of care to raise awareness about it."
She described the overwhelming response to her initial video and her determination to "shout to the roof tops about this" to ensure wider understanding of SMA.
Life at Home and Looking Forward
Jesy gave a candid insight into how her home life has transformed. "My house looks like a hospital," she admitted. Her hallway is filled with medical equipment, one twin requires a night-time breathing machine, and both have feeding tubes.
"I’m still struggling with it, I’m not going to lie… I just want to be their mum, I don’t want to be a nurse," she confessed. Despite the challenges, she remains hopeful, focusing on constant physiotherapy and the twins' bond. "They are still smiling, they are still happy and they have each other... All I can do is try my best to be there for them."
According to the NHS, Spinal Muscular Atrophy is a rare genetic condition that causes worsening muscle weakness, affecting movement, breathing, and swallowing. It does not impact intelligence.
