Jesy Nelson has shared a heartfelt update on her twin daughters, Ocean Jade and Story Monroe, who are battling the devastating effects of Spinal Muscular Atrophy Type 1 (SMA1). In a series of touching photos posted to Instagram, the Little Mix star gave fans a glimpse into their life as a family, showing her daughters enjoying a sweet day out together despite their difficult health battle.
Jesy, 34, who welcomed her daughters prematurely in May 2025 with ex-fiancé Zion Foster, bravely revealed earlier this year that both twins had been diagnosed with SMA1, a genetic neuromuscular disease that impacts muscle function and can shorten life expectancy. Without treatment, SMA1, the most severe form of the condition, often leads to death before the age of two.
In a recent Instagram Story, Jesy shared a heartwarming moment from the day out, showing her daughters dressed in matching outfits. She lovingly referred to them as “fairy little princesses,” demonstrating her unwavering strength and optimism as she navigates this difficult time. She also posted a snap of her dogs relaxing in the backseat during the outing, offering a glimpse into the loving and joyful moments that still fill their lives.
Despite the heartbreaking diagnosis, Jesy continues to advocate for change. She has been campaigning tirelessly for the NHS to include SMA1 in the newborn screening tests, which would allow for earlier detection and treatment. Sadly, her daughters’ diagnosis came too late for them to benefit from the test, which could have made a life-changing difference. Jesy’s ongoing efforts to bring awareness to SMA1 have led to significant progress. Wes Streeting, the UK’s health minister, recently announced that from October 2026, more than 400,000 babies will be screened for SMA, a massive win for the SMA community.
However, Jesy has expressed mixed feelings about the progress, as only certain areas of England will have access to the screening initially. “It’s a bit bittersweet because basically they are only doing it in certain areas of England. If you don’t live in that certain postcode, your baby won’t be tested,” Jesy explained. She emphasized that this should not be a “postcode lottery,” and all babies should have access to the screening, regardless of where they live.
In another emotional update, Jesy celebrated a “major milestone” in her campaign, thanking her supporters for helping her gather over 100,000 signatures for her petition, which is now set to be debated in Parliament. She expressed her gratitude for the support, calling her followers “incredible” and reflecting on the progress made in the fight for SMA screening.
Despite the challenges, Jesy remains hopeful. In a recent Q&A, she opened up about her decision to continue filming her Prime Video series, Life After Little Mix, after her daughters’ diagnosis. She said, “When the girls got their diagnosis, we decided that we wanted to continue filming. It was hard, but there’s a reason you guys are here, and we’ve got to make the best out of this situation.”
The reality of SMA1 is never far from Jesy’s mind, as she described the intense daily routines of medical procedures her babies must endure. “Every day is so full-on. I can speak about it, but I’ll never be able to explain how intense it is until you see it,” she shared, showing just how challenging and emotionally draining it has been for her.
Despite the grim prognosis, Jesy remains hopeful for her daughters’ future. In a conversation on Jamie Laing’s podcast, Jesy expressed her belief that her girls will defy the odds. “My girls are the strongest, most resilient babies, and I really believe that they are going to defy all the odds,” she said. Through it all, Jesy remains an incredibly strong advocate for her daughters and for the SMA community, and her journey continues to inspire millions.
