Jesy Nelson shared a heartwarming clip of her twin daughters holding hands on Sunday, describing them as her 'whole heart and soul' amid their ongoing battle with Spinal Muscular Atrophy (SMA) Type 1. The former Little Mix star, 34, revealed in January that her nine-month-old twins, Ocean and Story, had been diagnosed with the rare muscle-wasting condition, and she has since dedicated herself to their care.
Campaign for Newborn Screening
Since her twins' diagnosis, Jesy has been actively campaigning for the NHS to introduce newborn testing for SMA Type 1. She has stated that a late diagnosis means her daughters will never be able to walk. In her latest Instagram post, she captured the twins holding hands after a feed, writing: 'Right after their feed they always go to sleep but they have to hold each others hands to sleep.' She also shared another clip of them in matching yellow outfits, captioning it: 'My whole heart and soul.'
Despite the UK's National Screening Committee rejecting calls to introduce checks for another muscular disease in January, Health Secretary Wes Streeting announced plans last month for more than 400,000 babies to be screened for SMA from October 2026. Jesy has been liaising with the politician and recently visited the Prime Minister's residence, where she took selfies and wrote: 'When life throws you lemons...'
Postcode Lottery Concerns
While celebrating the progress, Jesy acknowledged that the rollout is limited to certain areas in England, creating a 'postcode lottery' for babies. She explained: 'If you do not live in that certain postcode or part of England then your baby won't be tested for SMA, which is really sad. All babies lives matter, so as amazing as it is there is still a long way to go.' She added that a petition with 100,000 signatures will now be debated in parliament, thanking her followers for their support.
At the start of a recent video, Jesy called the screening announcement a 'major milestone' and said she is 'really proud' of the campaign's progress. She noted that her daughters were not tested at birth because SMA screening was not available in England, but now it will be rolled out in October for all babies.
Car Theft Incident
Jesy's outing came after she offered a £10,000 reward following the theft of her car, which contained vital hospital equipment for her girls. The Black Defender, registration JJ73SSY, was stolen from her driveway in Brentwood, Essex, and last tracked in Chelmsford. She urged anyone with information to contact the police.
The NHS currently performs 'heel prick' tests on babies at around five days old to check for 10 treatable conditions, including cystic fibrosis. In a letter to Jesy and Giles Lomax, chief executive of SMA UK, Wes Streeting confirmed that SMA screening will now start in October this year, earlier than previously planned.
What is Spinal Muscular Atrophy?
Spinal Muscular Atrophy (SMA) is a disease that weakens a patient's strength by affecting motor neuron cells in the spinal cord, leading to gradual muscle wasting. Type 1 SMA is the most severe, evident at birth, and typically leads to death by age five. Type 2 is intermediate, Type 3 is mild, and Type 4 appears in adulthood.
