Jesy Nelson, a former member of the British girl group Little Mix, has shared devastating news about her twin daughters, Ocean Jade and Story Monroe. In an emotional Instagram video posted on Saturday, the 34-year-old singer revealed that her 8-month-old girls have been diagnosed with a rare neuromuscular disorder known as Spinal Muscular Atrophy (SMA) Type 1. “We were told that they’re probably never going to be able to walk; they probably will never regain their neck strength, so they will be disabled,” Nelson explained, visibly emotional during the video.
Diagnosed with SMA Type 1, Ocean and Story face significant challenges. According to the Cleveland Clinic, SMA is a genetic condition that leads to progressive muscle weakness and, over time, causes certain muscles to deteriorate. While there is currently no cure, therapies and medications are available to help manage the symptoms. Nelson emphasized the severity of the condition, noting, “It is the most severe muscular disease that a baby can get.”
In the video, Nelson recounted the rapid progression of her daughters’ condition. “In the space of two weeks of getting their diagnosis, I have to put them on breathing machines and do lots of stuff that no mother really should ever have to do on their child.”
The twins, born prematurely on May 15, 2023, were initially thought to be healthy after a high-risk pregnancy. Nelson recalled, “We were told, ‘They look great, they’re healthy and everything is fine.’” However, concerns began to arise when her mother noticed that the girls were not moving their legs as expected. Nelson said, “A few signs then started to show a bit later on that they were struggling to feed properly. It was getting gradually less and less and less.”
Nelson urged other parents to seek medical advice if they notice similar signs in their children. “If anyone is watching this video and they think they see these signs in their child, then please, please take your child to the doctor, to the hospital, because time is of the essence, and your child will need treatment,” she stated. “If it’s not treated in time, your baby’s life expectancy will not make it past the age of 2.”
The singer’s heartfelt message resonates deeply as she navigates this challenging journey with her family. Nelson, who left Little Mix in 2020, has faced significant public scrutiny in recent years. In late 2021, her bandmates unfollowed her on social media after accusations of blackfishing arose from her debut solo music video, “Boyz,” featuring Nicki Minaj. Following the backlash, she took a step back from the spotlight.
As Jesy Nelson continues to support her daughters in their fight against SMA, her openness about their diagnosis may help raise awareness about this rare condition and the importance of early intervention.
