Former Little Mix star Jesy Nelson has opened up about the emotional journey following her twins' diagnosis with spinal muscular atrophy (SMA), a rare genetic condition affecting muscle strength. In an interview on Heart Breakfast, Nelson revealed that her mother first noticed the babies' legs weren't moving, leading to the diagnosis.
Nelson described being rushed to hospital for laser surgery just two days into filming her documentary, 'Jesy Nelson: Life After Little Mix', and spending nearly three months in hospital. She continued filming even while contracting, setting up cameras in her hospital room.
After giving birth, Nelson moved to Cornwall seeking a peaceful family life. Doctors confirmed SMA, which she says is 'completely curable if caught early' but is not included in the standard newborn heel-prick test. She believes the omission is due to cost, calling it 'heartbreaking'.
Nelson is now campaigning for the UK government to add SMA testing to the newborn screening programme. She noted that since sharing her story, six people have messaged her saying it helped get their babies diagnosed. A petition needs 10,000 signatures to reach Parliament and 100,000 for further debate.
Focusing on her children's progress, Nelson said she celebrates small milestones like them holding their heads up for five seconds. Her six-part documentary, airing on Amazon Prime Video from February 13, offers an unfiltered look at her life after Little Mix, including motherhood and health battles.
Nelson concluded: 'I just want to make sure no one else has to go through what we did. If even one baby gets help because of this, then it’s all been worth it.'
