Former Little Mix star Jesy Nelson has revealed that 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 welcomed the twins prematurely last May with Zion Foster.
Nelson shared the diagnosis in an emotional Instagram video, detailing 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.' She 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, Nelson 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.' She added that many more families would experience what she is going through 'when it doesn't need to be happening.'
Recalling the prognosis from Great Ormond Street Hospital, Nelson shared the heartbreaking reality: '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,' but noted the relentless nature of their medical journey, feeling 'the hospital has become my second home.'
Giles Lomax, CEO of Spinal Muscular Atrophy UK, described SMA as 'a rare neuromuscular condition' affecting approximately one in 14,000 births per year. He explained that SMA Type 1, the most severe form, typically manifests in babies under six months old, who are often 'floppy infants' with difficulty breathing, coughing and swallowing, and 'tend to never sit.' Early detection and treatment are crucial; without treatment, 'the likelihood of them surviving past two is very slim.'
