Former Little Mix star Jesy Nelson's passionate campaign to ensure all newborns are screened for spinal muscular atrophy (SMA) will be unveiled in a new Prime Video documentary. Titled Jesy Nelson: Life Changing, the series, which is available from today, follows the 35-year-old artist as she advocates for changes to UK newborn screening laws following her twin daughters' diagnosis with the rare genetic condition.
A poignant moment in the documentary captures Nelson in a tearful interview with former Health Secretary Wes Streeting for ITV's This Morning programme. During their discussion, Nelson directly challenged Mr Streeting, asking, "Why now? Why did it take for me to come along with a platform for people to take it seriously?" She highlighted the availability of "life-changing" treatments and expressed frustration that the condition is not yet part of the routine heel prick test given to babies shortly after birth.
Nelson shared her heartbreak over her daughters' experience, explaining how they initially kicked their legs but then stopped within two months. She believes that early detection through a simple heel prick test could have made a significant difference, potentially avoiding some of the most devastating effects of SMA. Mr Streeting acknowledged the public pressure, stating his inbox had been "full of people asking the same questions" and that he felt "pressure" to implement the testing so "every child benefits."
Spinal muscular atrophy is a genetic condition that causes progressive muscle weakness and loss of movement. According to the NHS, it can lead to difficulties with breathing, swallowing, and movement, as well as muscle tremors and bone and joint problems. Early diagnosis and intervention are critical, as treatments can significantly improve outcomes and quality of life for affected children.
Nelson also voiced her profound frustration that her daughters' diagnosis was missed for months, stating, "It will never make sense to me that there are people in this world that have a decision over whether my baby will be disabled or not. Where is the justice in that?" Her campaign appears to be making an impact; the Department of Health announced on Thursday that a national newborn screening programme for SMA will be rolled out across England as part of an evaluation programme from the end of 2026. This initiative will see hundreds of thousands of babies screened shortly after birth.