Jesy Nelson has criticized the government for the prolonged delay in approving universal Spinal Muscular Atrophy (SMA) testing for all newborns in the UK. Nelson, who revealed in January that her 14-month-old twins, Ocean and Story, were diagnosed with SMA Type 1, announced this week that the screening test will now be rolled out nationwide.
During an appearance on the television program "This Morning," Nelson described the development as "bittersweet," expressing anger at the time it took to implement the testing. "It should not have taken me to come along for it to happen," she stated, emphasizing that advocacy for this screening has been ongoing for years. "People have been trying to take this to Parliament."
Nelson shared that she received a call from Sharon Hodgson, a health minister, and James Murray, Secretary of State for Health and Social Care, confirming the nationwide rollout. "Yesterday I couldn't stop crying," Nelson said. "As proud as I feel, it was also a bittersweet moment. At the end of the day, I am super proud. This isn't just me, this has been going on for years now." She added that Wales and Northern Ireland still do not have the testing in place.
Last month, a parliamentary debate on expanding newborn screening for SMA across England resulted in a decision that only 72 percent of the country would have access to the test when introduced in October, with the remaining 28 percent excluded. However, the government has now confirmed the expansion, which will screen hundreds of thousands of babies starting in October.
SMA is a rare muscle-wasting condition that weakens a person's muscles. Type 1 SMA is the most severe form, affecting a baby's ability to sit, crawl, or walk, and can lead to death by age five if untreated. Early diagnosis and treatment can significantly improve outcomes for affected children. Testing involves a simple heel prick taken shortly after birth.
Nelson expressed pride that her twins' story has contributed to this change. "I've always said I want this to be their little superpower," she said, looking forward to explaining to them when they are older how they helped bring about this change.
Secretary of State for Health and Social Care James Murray stated that the expansion means babies across England will be tested from birth, providing them with the best chance for a healthy life. He acknowledged the tireless work of campaigners and noted that the screening rollout is being accelerated.
Giles Lomax, Chief Executive Officer of SMA UK, called the development a significant step forward after years of campaigning. He highlighted that thousands of babies will benefit from earlier diagnosis and life-changing treatment. Lomax expressed gratitude to all involved and stated the organization looks forward to the day when every newborn across the entire UK is offered this test.