Pop star Jesy Nelson has shared the “devastating” news that her eight-month-old twin daughters have been diagnosed with a severe and rare muscle-wasting disease. In an emotional update posted to social media on Sunday, the former Little Mix singer confirmed that twins Ocean Jade and Story Monroe are battling Spinal Muscular Atrophy Type 1 (SMA-1).
The diagnosis follows months of medical uncertainty for the 34-year-old singer and her fiancé, Zion Foster. Nelson revealed that the twins, who were born prematurely in May, underwent four months of rigorous testing before the condition was confirmed. SMA-1 is a genetic neuromuscular disorder that attacks motor neurons in the spinal cord, leading to rapid muscle wasting and weakness.
“We were told that they’re probably never going to be able to walk,” Nelson told followers, describing the news as the most “heartbreaking” moment of her life. She noted that early warning signs included a distinctive “floppiness,” an inability to support their own heads, and “frog-like” positioning of the legs.
Experts emphasize that SMA-1 is the most severe form of the condition, historically carrying a life expectancy of less than two years without intervention. However, medical professionals have praised Nelson for using her platform to highlight the disease, noting that early detection is critical. Treatment options, including gene therapy, are available on the NHS and can significantly alter the progression of the disease if administered quickly.
The singer’s announcement has sparked renewed calls for the UK to include SMA in routine newborn blood-spot screening. Currently, around 70 babies are born with the condition annually in the UK. Nelson urged parents to trust their instincts if they notice developmental delays, stating that she chose to speak out so that “something good” could come from her family’s struggle.
