Former Little Mix star Jesy Nelson has shared a glimpse into the daily reality of her twin daughters, Ocean Jade and Story Monroe, who were diagnosed with spinal muscular atrophy (SMA) Type 1. In an emotional plea, she called for universal newborn screening for the condition ahead of a parliamentary debate.
Nelson, 35, revealed in January that her 13-month-old twins have SMA Type 1, a rare genetic disorder causing progressive muscle weakness. Over the weekend, she posted a photo of their spinal braces on Instagram, writing: 'Just a reminder that future SMA babies' lives don't need to look like this! These are Ocean and Story's spinal braces they now have to wear every day.'
Earlier this year, Nelson launched a petition that garnered over 150,000 signatures, leading to the announcement that SMA screening would be rolled out as part of in-screening evaluations from October 2026, earlier than the planned January 2027. However, she expressed concern that the rollout would initially cover only 72% of England, calling it a 'postcode lottery' that is 'not fair.'
In a video accompanying her post, Nelson became emotional as she said: 'It makes me so sad to think that my children's lives could've been so different.' She urged supporters to join her at a Westminster debate on Monday, where she will be accompanied by Giles Lomax, chief executive of SMA UK.
An NHS spokesperson confirmed that screening for SMA will begin in October using laboratories with suitable equipment, as part of an evaluation requested by the UK National Screening Committee. They added that the NHS is exploring how to extend the programme to the rest of the country.
