Former Little Mix star Jesy Nelson has revealed her twin daughters, Ocean Jade and Story Monroe Nelson-Foster, have been diagnosed with Spinal Muscular Atrophy (SMA) Type 1, a rare genetic condition that may prevent them from ever walking.
The 34-year-old singer, who welcomed the twins prematurely last May with Zion Foster, shared the diagnosis in an emotional Instagram video. She described the 'gruelling three/four months' leading to the discovery after an 'endless' series of appointments confirmed her daughters had 'a severe muscle disease called SMA Type 1.'
Nelson has since begun campaigning for SMA1 screenings from birth and started a petition to add the condition to the newborn blood spot screening test, also known as the heel prick test. In an emotional conversation with Health Secretary Wes Streeting on ITV's This Morning, she said: 'It's just madness to me that we are living in a day and age now where we have got three treatments that are life changing, and it's still not part of the heel prick test.'
Recalling the prognosis from Great Ormond Street Hospital, Nelson shared: 'We were told that they're probably never going to be able to walk, they probably will never regain their neck strength, so they will be disabled.' She expressed profound gratitude that her daughters have received treatment, acknowledging that 'if they don't have it, they will die.'
Giles Lomax, CEO of Spinal Muscular Atrophy UK, explained that SMA is a rare neuromuscular condition affecting approximately one in 14,000 births per year. Type 1, the most severe form, typically manifests in babies under six months old, who tend to be 'really floppy infants' with difficulty breathing, coughing and swallowing. Without treatment, the likelihood of surviving past two years is 'very slim.'
Lomax stressed the importance of early detection, stating that if babies have a blood test to identify the faulty SMN1 gene and are given disease-modifying therapies early, 'in many cases these children can grow up to follow normal development pathways.'
