Jesy Nelson Posts Video Urging Full SMA Screening Rollout in England

Jesy Nelson posted a nearly seven-minute video expressing outrage after Public Health Minister Sharon Hodgson argued against full national rollout of spinal muscular atrophy screening during a parliamentary debate on Monday. The Independent reported.

Nelson, whose twin daughters Ocean Jade and Story Monroe Nelson were diagnosed with SMA type one, launched a petition that gathered more than 150,000 signatures.

Screening will begin as part of in-screening evaluations from October 2026, three months earlier than first planned, yet the current plan leaves 28 percent of babies unscreened. Nelson stated there is factual evidence that treatment from birth is life-changing and that without it children die before age two.

She questioned Hodgson directly, asking why it is safe enough for 72 percent of England to receive the test at birth but not for the remaining 28 percent.

Nelson showed Hodgson a video of two sisters with SMA who received different treatments, resulting in one using a wheelchair and the other running. She said Hodgson appeared surprised and had not realized the full effects of early treatment. Nelson described her daily care routine, stating she gives her daughters medicine every four hours, turns them every two hours, and watches them closely to prevent choking on saliva.

She urged Hodgson and Health Secretary James Murray to provide a clear timeline for 100 percent coverage across England. A Department of Health and Social Care spokesperson said planning is under way for a large-scale trial across the NHS screening hundreds of thousands of babies from October.

The spokesperson added that babies not included are not being excluded to form a control group and that the government is considering options to extend the programme further.