Jesy Nelson celebrated a deeply personal victory after campaigning for newborn spinal muscular atrophy (SMA) testing. Her efforts helped bring about a major policy change in the U.K. The milestone came more than a year after doctors diagnosed her twin daughters with the rare genetic condition. Her family’s heartbreak has now brought hope to thousands of others.
The former Little Mix star had spent months urging health officials to introduce universal newborn screening for SMA. Her efforts ultimately helped bring nationwide testing a step closer, giving future babies a better chance at receiving treatment before symptoms appeared.
Jesy Nelson says universal newborn SMA testing means earlier diagnosis and better treatment outcomes
Nelson became emotional while announcing that the U.K. would add SMA testing to routine newborn screenings this year. She shared the news on Instagram, and reflected on what it meant for her 14-month-old daughters, Ocean Jade and Story Monroe. “They’re old enough to understand this moment, and they can understand that their story was part of a huge change,” she wrote.
The outlet explained that Nelson welcomed the twins with her former fiancé, Zion Foster, in May 2025. Because they arrived prematurely, doctors initially believed delayed milestones were linked to their early birth. After months of medical appointments, however, the girls were diagnosed with SMA Type 1 in January.
The U.K.’s Department of Health and Social Care said, “SMA can leave babies unable to sit up, crawl or walk. In the most severe cases, it stops them breathing or swallowing but, caught early enough, treatment can significantly improve outcomes for affected children.”
The publication noted that SMA causes progressive muscle weakness. Severe forms can lead to fatal respiratory complications. While there is no cure, early gene therapy can dramatically improve outcomes. Treatment works best when it begins before symptoms develop.
Nelson previously described receiving the diagnosis as “heartbreaking.” However, she said she wanted to turn it into “their superpower.” Her petition for universal newborn screening collected more than 150,000 signatures. The support helped push the campaign forward. Celebrating the breakthrough, she wrote, “We made change, change that will now make such a huge difference to babies that will be diagnosed with SMA from birth, their lives will now look completely different and I just am so proud!”
The Telegraph reported that England would begin rolling out the heel-prick screening program in October. The rollout will continue through 2027. By then, every newborn screening laboratory across the country will offer the test. Nelson welcomed the announcement, saying, “Today is a day of hope.” She added, “This is a victory for every family affected by SMA. Whilst it can’t change the future of our children, I know it marks the beginning of a brighter future for future SMA families.”
She also shared an emotional message in her Instagram video, saying, “No baby now will be missed. They will get diagnosed from birth … and hopefully they will get the treatment and their life will look completely different now.”
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