Jesy Nelson Reveals Twin Daughters’ Rare Muscle Disease Diagnosis

London, England — Jesy Nelson, the former Little Mix star, has shared heartbreaking news about her twin daughters, who have been diagnosed with a rare and severe muscle disease known as Spinal Muscular Atrophy (SMA) Type 1. In an emotional video posted on Instagram, Nelson explained that her daughters, Ocean Jade and Story Monroe, are likely to face significant challenges, including the possibility of never being able to walk.

Jesy gave birth to her twins prematurely in May 2025. The girls were initially described as ‘healthy and fighting strong’, but as they approached eight months, Jesy reported that they had not shown expected developmental progress. After months of assessments and hospital visits, they received the distressing diagnosis.

In her video, Nelson explained, “After the most gruelling three, four months, and endless appointments, the girls have now been diagnosed with a severe muscle disease called SMA Type 1. For those of you that don’t know, it is the most severe muscular disease that a baby can get.” She described how SMA affects all muscles in the body—including those responsible for breathing and swallowing—leading to a reduced life expectancy if treatment is not administered swiftly.

The treatment for SMA involves administering a therapy that delivers a healthy version of the gene that is missing, halting further muscle degeneration. However, Jesy noted that any muscle damage that has already occurred cannot be reversed. “It stands for spinal muscular atrophy, which can affect every muscle in the body,” she said. “If it’s not treated in time, your baby’s life expectancy will not make it past the age of two.”

During the diagnosis process at Great Ormond Street Hospital, doctors informed Jesy and her partner, Zion Foster, that their daughters may never regain muscle strength necessary for mobility or neck control. “They probably will never regain their neck strength, so they will be disabled,” Nelson shared tearfully.

Despite the grim diagnosis, Jesy expressed hope. “The best thing we can do right now is get them treatment and just hope for the best,” she said, revealing that she has had to adapt her daily life significantly, caring for her twins in ways that no mother should have to.

Recognizing the importance of early diagnosis, Jesy urged parents to be vigilant for signs of SMA. Symptoms can include a lack of movement, feeding difficulties, and decreased muscle tone. “The signs to look for are floppiness and an inability to hold themselves up without support,” she explained. She lamented that while SMA screening is not standard in all countries, early detection could save many children’s lives.

Jesy ended her video by encouraging parents who notice similar symptoms in their children to seek medical advice immediately. “Time is of the essence, and your child will need treatment. The quicker you get these, the better their life will be,” she said. “Thank you for listening.”