Jesy Nelson Opens Up About Heartbreaking Diagnosis for Twin Daughters

British pop star Jesy Nelson, formerly of the girl group Little Mix, has shared an emotional and devastating update about her twin daughters, Ocean Jade and Story Monroe Nelson‑Foster. The 34‑year‑old singer revealed that both of her eight‑month‑old girls have been diagnosed with Spinal Muscular Atrophy (SMA) Type 1, a rare and severe genetic neuromuscular condition that significantly weakens the muscles and can be life‑threatening if not treated promptly. 

Nelson and her fiancé, musician Zion Foster, welcomed Ocean and Story prematurely on May 15, 2025, at approximately 31 weeks gestation following a high‑risk pregnancy complicated by Twin‑to‑Twin Transfusion Syndrome (TTTS). The twins spent several weeks in the neonatal intensive care unit (NICU), and while both were initially stable after birth, concerns arose in the following months when Nelson’s mother noticed the girls were not moving their legs as expected. 

After a series of medical appointments and genetic testing, Nelson revealed in a heartfelt Instagram video on January 4, 2026 that both daughters had been diagnosed with SMA Type 1, the most severe form of the condition. She tearfully explained that doctors at Great Ormond Street Hospital for Children told her the illness “affects every muscle in the body, from the legs and arms to breathing and swallowing,” and that without immediate treatment, the girls’ life expectancy could be less than two years. 

SMA is an inherited neuromuscular disorder in which the death of specialized nerve cells — called motor neurons — prevents muscles from receiving the signals they need to function. According to medical experts, Type 1 SMA (also known as Werdnig‑Hoffmann disease) typically appears in infancy and causes profound muscle weakness, difficulty swallowing, and respiratory challenges. Without supported breathing or intervention, infants with SMA Type 1 rarely survive beyond age two. 

In her emotional video, Jesy described how the “last few months have been the most heartbreaking time of my life.” She reflected on the shock of receiving the diagnosis and the emotional toll of seeing her daughters struggle with developmental challenges — both physically and medically — including challenges with feeding and neck control. Despite this, she expressed profound gratitude that early treatment has already begun, noting that “once the girls got treated, it was a very rapid process because time is of the essence with this disease.” 

Nelson also shared how the family is coping with the difficult reality. She admitted that the hospital has become like a second home, where she has taken on many caregiving responsibilities that no parent should have to face, including managing breathing support and feeding equipment for her daughters. However, she remains optimistic, telling her followers that she believes her girls can “defy all the odds” and accomplish things previously thought impossible. 

The singer’s openness has sparked an outpouring of support from fans, fellow celebrities, and health‑awareness advocates on social media. Many have praised Jesy for raising awareness of SMA, a condition that, while rare, is one of the most serious inherited neuromuscular diseases in infancy — affecting roughly between 1 in 6,000 and 1 in 11,000 newborns worldwide. 

Jesy has also spoken candidly about the emotional process of grieving the future she initially imagined for her children, saying that she sometimes feels as though her life has “done a 360,” but that she is learning to focus on the present and fight relentlessly for her daughters’ well‑being. Her fiancé, Zion Foster, echoed her sentiments on social media, posting a photo of the twins and writing, “Still smiling through all the challenges. Daddy loves you so much.” 

As the family continues to navigate this challenging journey, Jesy’s message remains one of hope, resilience, and advocacy. By sharing their story publicly, she aims to help other parents recognize early warning signs of neuromuscular disorders and to emphasize the importance of early medical intervention — a crucial factor in improving the quality of life and long‑term outcomes for children with SMA.