Frank Rondel
Former Little Mix singer Jesy Nelson has revealed that her twin daughters, Ocean Jade and Story Monroe Nelson-Foster, may never walk following a diagnosis of a rare genetic disorder, according to Customreceipt with reference to The Guardian. Nelson, 34, and her fiancé Zion Foster welcomed the twins prematurely in May, after which they underwent extensive hospital evaluations over four months before receiving the diagnosis of spinal muscular atrophy type 1 (SMA1).
In an emotional video shared on Instagram, Nelson explained that medical professionals informed them the twins would likely never gain full neck strength or be able to walk, leaving them with significant disabilities. She emphasized the urgency of treatment, stating, “Thankfully, the girls have had their treatment, which you know, I’m so grateful for because if they don’t have it, they will die.”
The singer described the months leading to the diagnosis as “gruelling,” highlighting the importance of raising public awareness about SMA1 and its early warning signs. SMA1, the most severe form of the genetic neuromuscular disorder, results in muscle weakness, progressive loss of movement, and potential paralysis. Nelson pointed out that recognizing symptoms such as extreme floppiness, inability to support oneself, frog-like leg positioning, and rapid abdominal breathing is vital for timely intervention.
She urged parents observing these signs in their children to seek immediate medical attention, stressing that early treatment significantly improves outcomes. The NHS reports that approximately 70 children are born with SMA each year in the UK, with fewer than 10% surviving past the age of two without intervention. SMA UK, a charity supporting affected families, notes that early detection is critical and criticizes the NHS for not yet including SMA in its standard newborn blood-spot screening, which currently checks for nine other rare conditions.
Since 2019, the NHS has introduced three transformative treatments for SMA, including gene therapy and other disease-modifying medications. In Scotland, SMA was recently added to the newborn screening program through a two-year pilot, allowing early-treated infants to potentially follow typical developmental paths.
Nelson revealed that the twins’ mother first noticed reduced leg movement, followed by difficulties in feeding. Initially, the couple were reassured that developmental delays were likely due to prematurity, as the twins were born at 31 weeks following a high-risk pregnancy complicated by twin-to-twin transfusion syndrome (TTTS), which affects 10–15% of identical twins sharing a placenta. Nelson underwent an emergency procedure and spent ten weeks in hospital prior to the preterm birth.
Reflecting on the diagnosis, Nelson admitted the experience had been profoundly distressing, describing it as “the most heartbreaking time of my life” and comparing it to grieving the life she had envisioned with her children. Nevertheless, she expressed hope for the twins’ future, saying, “I truly believe that my girls will fight all the odds and, with the right help, they will fight this and go on to do things that have never been done.”
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