Children have same illness as Jesy Nelson's twins

Several parents say their children have been diagnosed with spinal muscular atrophy (SMA), the same condition announced by Jesy Nelson, and they are urging the NHS to add SMA to the newborn heel prick screening test.

Several parents report their children have been diagnosed with spinal muscular atrophy (SMA), the same condition recently disclosed by singer Jesy Nelson. They and campaign groups are urging the NHS to add SMA to the newborn blood spot screening (heel prick) so treatment can begin earlier. The UK currently does not include SMA as a routine part of that test, while many other countries do. Health officials and the National Screening Committee have said the programme is under review and a pilot study is planned. Key facts: - Parents in the report say their children have SMA Type 1, the severe form mentioned by Jesy Nelson. - Gene therapies exist that are most effective when administered early, and campaigners say newborn testing would allow earlier treatment. - The NHS newborn blood spot test does not currently include SMA; the UK has previously not recommended routine screening for SMA. - The National Screening Committee reassessed SMA screening in 2023 and announced plans for a pilot study; some reports suggest a regional pilot could begin in 2027, and Health Secretary Wes Streeting has expressed support for challenges to current diagnosis timelines. Summary: Campaigners and affected families want SMA added to the heel prick newborn screening to enable earlier treatment. The National Screening Committee has planned a pilot study to evaluate screening, and further decisions will follow that evaluation.