Jesy Nelson Achieves Milestone in Campaign for SMA Screening Following Daughters’ Diagnosis
Jesy Nelson, 34, former member of Little Mix, has reached a significant milestone in her campaign to expand spinal muscular atrophy (SMA) screening in the UK after her twin daughters were diagnosed with the condition.
On Friday, Nelson announced that a petition calling for the inclusion of SMA in the national newborn screening programme will be debated in Parliament on 22 June. The singer has been advocating for wider NHS testing since her one-year-old daughters, Ocean and Story, were diagnosed with SMA Type 1 earlier this year.
The campaign aims to ensure that effective treatments are more accessible and that government guidelines do not impede timely care. The delayed diagnosis of Ocean and Story has resulted in serious health implications, leaving the twins with limited mobility and requiring specialized nighttime respiratory support and feeding tubes.
SMA Type 1 is a rare genetic disorder caused by the absence of a gene that most individuals naturally carry. Without prompt treatment, the disease progressively weakens muscles, ultimately affecting breathing and swallowing functions.
Earlier this year, Nelson received promising news when Health Secretary Wes Streeting announced that heel-prick blood testing for SMA will be rolled out across England. The pilot programme, beginning in October 2026, will screen approximately 400,000 newborns. Previously, the NHS only screened infants at around five days old for ten treatable conditions, including cystic fibrosis.
Nelson has continued to update her supporters on social media, sharing both the challenges her family faces and the progress of her advocacy. She has described caring for her daughters alongside her former partner Zion as an emotionally demanding journey but remains optimistic about the treatments that could extend their lives.
In a recent podcast conversation with Jamie Laing on Great Company, Nelson emphasised the resilience of her daughters. “My girls are the strongest, most resilient children, and I truly believe they will overcome every challenge,” she said.
