When British pop star Jesy Nelson bravely shared her family's struggle on social media, no one expected such a raw story. The former Little Mix singer, known for her chart-topping hits and characteristic openness, let fans into her world yet again – this time revealing the toughest news a parent can face. Her eight-month-old twin daughters, Ocean Jade and Story Monroe, have been diagnosed with spinal muscular atrophy (SMA) type 1, a rare and life-altering genetic condition. How is Jesy coping, what does SMA mean for her twins’ future, and why is she determined to make her voice heard beyond the stage?
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The shocking diagnosis and a whirlwind year for Jesy Nelson
It has been a tumultuous year for Jesy Nelson and her fiancé Zion Foster. Their daughters were born prematurely in May 2025 at 31 weeks, following a pregnancy marked by a dangerous condition called twin-to-twin transfusion syndrome. After spending several tense weeks in neonatal intensive care, the family was hopeful, believing the hardest part was behind them.
But soon after returning home, Jesy’s mother Janice noticed “[the babies] hardly moved their legs at all.” Medical teams initially reassured the family, suggesting that the signs could be attributed to the girls’ early arrival. However, months of persistent developmental concerns, weak muscle tone, and feeding difficulties led the family down a winding path of hospital visits.
Eventually, after thorough investigations at Great Ormond Street Hospital, Ocean Jade and Story Monroe were diagnosed with SMA type 1. This rare neuromuscular disorder, as Jesy shares, leads to progressive muscle weakness, affecting movement, swallowing, and even breathing. In a tearful video, Jesy confessed:
“I am grieving a life I thought I was going to have with my children.”
SMA type 1: a race against time and the realities facing the Nelson family
SMA type 1 is the most severe form of spinal muscular atrophy, a genetic condition caused by errors in the SMN1 gene. According to NHS data, around 70 babies are diagnosed with SMA every year in the UK. The condition strips away the ability to move, hold up the head, and, eventually, even breathe independently unless treatment is given fast.
The odds can be frightening. Experts agree that “without treatment, most children don’t reach their second birthday.” But there is hope when intervention comes quickly. Jesy described how she and Zion pushed for urgent care:
“We went into ‘fight or flight’ mode.”
The twins, now nearly eight months old, are receiving advanced therapy – including genetic treatment and regular use of respiratory equipment at home. Jesy is open about the challenges: learning to use medical machines, constant hospital checkups, and the emotional toll on their daily life.
Medical professionals explain that newborn screening for SMA is not yet part of the UK’s standard tests. “Time is crucial, as irreversible damage happens in the earliest weeks,” one specialist explained. Jesy and Zion’s situation – needing to chase a diagnosis for months – has highlighted this gap. The couple are now ardent campaigners for the inclusion of SMA in all newborn checks.
Jesy’s story is not just about her daughters’ condition. It’s about rearranging expectations and daily routines – and about hope:
“We got treatment just in time, and it’s probably saved my girls’ lives.”
She’s learning to “be a nurse, a mother, and an advocate” all at once, demonstrating remarkable resilience even as she admits, “some days I just break down and cry.”
Public reaction, community support, and Jesy’s ongoing mission
In the wake of her announcement, messages of solidarity poured in from fans, friends, and fellow parents. Jesy’s raw honesty struck a chord across social media. She has received a wave of support, many sharing their own experiences or expressing admiration for her openness. The singer’s decision to share the early warning signs – weak muscle tone, frog-like legs, floppy limbs, trouble feeding and breathing – is already raising vital awareness. On Instagram and talk shows, she has urged parents not to ignore their instincts:
“If something doesn’t feel right, keep pushing for answers.”
Health advocates, including the Association SMA UK, have praised Jesy’s advocacy. As the debate over newborn screening gains momentum, her family’s journey is pushing forward calls to add SMA to the national test panel. Jesy’s honesty about the grief and uncertainty, but also the hope and determination that drive her every day, is already making a real difference. “I believe my girls will fight this,” she says, echoing the determination so many families facing rare disorders must find.
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Little Mix’s Jesy Nelson reveals her baby twins’ devastating diagnosis in emotional video
Jesy Nelson reveals twins' devastating SMA Type 1 diagnosis in tearful video
