Jesy Nelson has opened up about her devastation after a parliamentary debate on spinal muscular atrophy (SMA) screening from birth fell short of expectations. The Neon Lights singer, 35, whose one-year-old twins Ocean and Story were diagnosed with SMA Type 1, called the outcome “heartbreaking” and vowed to continue campaigning for full coverage.
The debate, held on Monday, saw MPs approve a staggered rollout of newborn screening, meaning just 72% of England will have access to the life-saving tests from October, while the remaining 28% will be left without.
Speaking outside Parliament, Jesy fought back tears:
“I’m going to be completely honest, I was absolutely fuming. I feel so let down. It’s sad… like our children’s lives could look so different. We are still debating whether future SMA children should be disabled or not. How is that fair?”
Jesy launched a petition earlier this year which gathered more than 150,000 signatures, pressing the government to ensure every newborn has access to SMA testing. She stressed the treatment is “completely life-changing if given from birth,” showing a video of two sisters with SMA—one treated at birth, the other not—to underline the stark difference in outcomes.
“I cannot tell you the outrage I feel as a mother with two children suffering from SMA Type 1,” she told her followers on Instagram. “You’re basically telling me if you live in a certain postcode, you’re not as important as the other 72%. Your life doesn’t matter as much. It’s outrageous.”
The singer called out Health Minister Sharon Hodgson, questioning the rationale behind restricting access:
“If it’s safe for 72% of England, why not for all? Why are we still debating whether children deserve to live or not?”
MPs Amanda Martin and Ruth Jones also spoke out during the session, highlighting the injustice of postcode-based restrictions and urging the government to catch up with other nations like Ukraine, which has begun newborn SMA screening even amid wartime conditions.
Jesy promised her fight isn’t over: “We will keep pushing until no child has to suffer unnecessarily from this awful disease.”
