Former Little Mix star Jesy Nelson has launched a powerful critique against healthcare staff who visited her twin daughters following their premature birth, describing their failure to identify signs of Spinal Muscular Atrophy (SMA) as "really worrying." The 34-year-old singer revealed that her daughters, Ocean Jade and Story Monroe, whom she shares with Zion Foster, have been diagnosed with SMA1 after what she called "the most gruelling three or four months" of her life.
A Mother's Anguish Over Missed Signs
Jesy explained that her twins were monitored extensively by healthcare professionals in the months after their premature birth, yet none detected the early indicators of the rare genetic condition. It was only when her mother, Janice White, noticed the infants weren't "moving their legs properly" at six months old that alarm bells finally rang. Speaking to Sky News' The UK Tonight programme with Sarah-Jane Mee, Jesy admitted it was "difficult from the get go" for her to recognise symptoms, particularly because staff had repeatedly warned her not to compare her premature babies' development to typical milestones.
The Emotional Toll of Diagnosis
The singer became visibly emotional as she described how her home now "looks like a hospital" since learning to care for her daughters' complex medical needs. "We've been told that they will probably never walk, they'll probably never regain their neck strength," Jesy revealed, adding that her twins will likely require wheelchairs. Story requires a breathing machine at night because she isn't strong enough to breathe independently, while both girls need cough assist machines and feeding tubes to manage secretions.
"I've had to learn this within the space of a few days of getting their diagnosis," Jesy explained, "and it's just so much to deal with while you're also trying to deal with this horrendous thing that's just happened and still be a mum as well. That's the part that I really, I'm still struggling with it, I won't lie, but that is the part that like really gets me, is I just want to be their mum, I don't want to be a nurse."
Campaigning for Change and Awareness
Since publicly sharing her family's experience, Jesy has become a vocal campaigner for newborn SMA screening across the UK. She recently met with Health Secretary Wes Streeting, breaking down in tears as she showed him a video of a child affected by SMA type 1 in a wheelchair and pleaded for changes to testing protocols. "No parent should have to go through this," she sobbed during the emotional meeting.
The UK National Screening Committee is currently reviewing the case for SMA testing, with the next report on formally adopting tests within the NHS expected to continue until 2028. This follows a previous ruling against standard testing in 2018. Medical experts emphasise that if SMA1 is treated pre-symptomatically at or near birth, the disease can be largely prevented, with many children developing minimal or no symptoms through early intervention.
A Personal Mission to Prevent Others' Suffering
Jesy explained her decision to share her story publicly stems from a desire to prevent other families from experiencing similar oversight. "If I'd seen someone else's video, maybe, just maybe I could have prevented this from happening if I'd have seen a video and caught it early enough," she reflected. "I don't know if this is even crazy to say this, like it feels selfish to keep this to myself and not potentially save a child's life. I'm going to shout to the rooftops about this."
The genetic neuromuscular disease causes progressive muscle weakness and wasting due to motor neuron loss, affecting every muscle in the body including legs, arms, breathing, and swallowing. Jesy described how the condition "essentially what it does over time is it kills the muscles in the body," making early detection through simple heel prick blood tests crucial for effective treatment.
Despite the challenges, Jesy finds solace in her daughters' resilience. "They are still smiling, they're still happy," she said. "They have each other, and that's like the main thing that I'm like so grateful for because they could be doing this by themselves, but they're twins and they're going through this together." Her campaign continues to gain momentum as she advocates for systemic changes that could spare countless families from similar diagnostic delays.
