Former Little Mix singer Jesy Nelson has shared the devastating news that her infant twin daughters have been diagnosed with a severe genetic condition, describing the ordeal as the 'most heartbreaking time' of her life.
A Mother's Instinct and a Delayed Diagnosis
In an emotional video posted to Instagram on Sunday, the 34-year-old explained that her mother first raised concerns about the babies' leg movement. Jesy took her daughters, Ocean Jade and Story Monroe, to doctors, but her fears were initially dismissed because the twins were born prematurely at 31 weeks.
Jesy revealed she was repeatedly told not to compare her premature babies to others and that they would reach milestones in their own time. Routine health visitors also offered reassurance when Jesy and her partner, Zion Foster, grew worried about the twins' feeding, stating the infants were 'great and healthy'.
The Devastating Diagnosis: SMA Type 1
After what she called 'the most gruelling three or four months' of endless appointments, the twins received a diagnosis of Spinal Muscular Atrophy (SMA) Type 1. This rare genetic neuromuscular disease causes progressive muscle weakness and wasting due to the loss of motor neurons.
Fighting back tears, Jesy explained the condition 'affects every muscle in the body down to legs, arms, breathing and swallowing', adding that 'essentially what it does over time is it kills the muscles in the body.'
She stated that specialists from Great Ormond Street Hospital in London have advised that the girls 'are probably never going to be able to walk or regain their neck strength so they will be disabled.' The singer stressed that without timely treatment, life expectancy for babies with SMA Type 1 typically does not extend past the age of two.
A Call for Awareness and Early Testing
Jesy ended her heartfelt video with a crucial public message, aiming to help other parents by raising awareness of the early signs of SMA. She highlighted symptoms including:
- Floppiness in babies
- Bell-shaped bellies
- Rapid breathing
She also stressed the vital importance of the heel prick test at birth, which can screen for SMA and other conditions. 'The best thing we can do right now is get them treatment and hope for the best,' she said, confirming the twins have begun their treatment plan.
Jesy welcomed her twin daughters with partner Zion Foster on May 15, 2025, after a difficult pregnancy that saw her hospitalised with twin-to-twin transfusion syndrome (TTTS). The babies spent time in a Neonatal Intensive Care Unit (NICU) following their early arrival.
Despite the profound challenges, the singer expressed defiant hope: 'I truly believe my girls will defy all the odds with the right help and do things that have never been done.'
