Jesy Nelson's Twins Battle Rare Genetic Disease

Jesy Nelson is currently dedicating her focus to her twin daughters, Ocean Jade and Story Monroe, who were prematurely born in May 2025 and subsequently diagnosed with Spinal Muscular Atrophy Type 1 (SMA1). This rare genetic condition progressively weakens muscles, affecting crucial functions like breathing and swallowing. Nelson candidly shared her emotional struggles, including a moment of tears upon seeing the twins' specialized feeding chairs, describing it as another challenging obstacle.

Driven by her personal experience, Nelson is now a vocal advocate for expanding the NHS heel prick test to include SMA1 screening. She believes earlier detection, potentially through a cost-effective test, could have preserved her daughters' muscle strength. Nelson has successfully rallied support, with a petition reaching over 100,000 signatures, prompting parliamentary consideration for faster funding and process implementation.

Nelson has temporarily set aside her music career to concentrate on her children's well-being and her advocacy efforts. She described the daily care as an intense emotional rollercoaster, often feeling like she is causing her babies pain during necessary medical procedures. Despite the grim prognosis of Type 1 SMA, which often has a life expectancy of less than two years without intervention, Nelson remains hopeful that her resilient daughters will defy the odds.