Former Little Mix member Jesy Nelson has shared heartbreaking news about her infant twin daughters. In a deeply emotional video posted on Instagram, the 34-year-old singer announced that her daughters, Ocean Jade and Story Monroe, have been diagnosed with Spinal Muscular Atrophy (SMA) Type 1, a rare and severe genetic disorder that causes progressive muscle weakness.
Key Takeaways
- Jesy Nelson revealed her 8-month-old twin daughters have been diagnosed with a rare, severe muscular disease called Spinal Muscular Atrophy (SMA) Type 1. SMA is a genetic neuromuscular disorder that weakens muscles and affects movement.
- Doctors say the twins may never walk or regain strength in key muscles, and the condition can be life-threatening without treatment.
- Jesy shared the news in an emotional Instagram video, describing months of medical appointments and her family’s journey since the diagnosis.
- She hopes sharing their story raises awareness about early signs of SMA and the importance of prompt medical care.
Jesy, who welcomed her daughters with fiancé Zion Foster in May 2025, explained that the girls were born prematurely at 31 weeks and faced ongoing health challenges from the start. After months of medical appointments and concern about their development, doctors at Great Ormond Street Hospital confirmed the SMA Type 1 diagnosis, which affects every muscle in the body, including those used for breathing, swallowing, and movement.
In her video, Jesy shared that she was told the twins may never walk or gain full muscle strength, and that the condition would likely result in lifelong disability. She described the last several months as “the most heartbreaking time” of her life. Despite the devastating news, she expressed gratitude that her daughters have begun treatment, which doctors say is essential for their survival and gives them a fighting chance.
SMA Type 1 is considered the most severe form of spinal muscular atrophy and usually appears within the first six months of life. It results from a genetic mutation that prevents nerve cells in the spinal cord from signalling muscles to function properly. Without early treatment, the disease can significantly shorten life expectancy, often to under two years.
Jesy said her family’s journey has been emotionally exhausting and physically demanding. She spoke candidly about how hospital visits have become routine and the responsibility she feels in caring for her daughters’ complex needs. Her message wasn’t just an update, it was also a plea for awareness. She urged other parents to pay attention to early signs like limited limb movement or difficulty feeding so that diagnosis and treatment can happen as soon as possible.
The announcement has drawn an outpouring of support from fans and peers alike, with many applauding Jesy for her bravery in sharing such a personal story. While the future remains uncertain, she said she believes her daughters will “defy the odds” with the right care and love from their family.
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