LONDON — Former Little Mix member Jesy Nelson shared a somber health update on Sunday, revealing that her eight-month-old twin daughters have been diagnosed with Spinal Muscular Atrophy (SMA) Type 1. Nelson, 34, informed social media followers that Ocean Jade and Story Monroe, born in May 2025, may never walk or regain full neck strength due to the rare neuromuscular disorder.
SMA Type 1 is a genetic condition that causes muscles to waste away and typically manifests within the first six months of life. While the disorder has no known cure, Nelson confirmed the twins have begun essential treatments to manage symptoms and prevent life-threatening complications.
The singer described the intensive care required for the infants, including the use of breathing machines, noting she has had to assume a role similar to a nurse. Nelson and her fiancé, Zion Foster, welcomed the identical twins prematurely at 31 weeks following a high-risk monochorionic/diamniotic pregnancy.
By sharing her family’s experience, Nelson aims to raise awareness for early symptoms, such as rapid abdominal breathing and a “frog-like” leg position. She urged parents observing these signs to seek immediate medical intervention, emphasizing that “time is of the essence” for effective treatment.
Understanding Spinal Muscular Atrophy and the Importance of Early Detection
The diagnosis of Spinal Muscular Atrophy (SMA) Type 1 represents a profound shift for any family, necessitating a transition from standard parenting to complex medical management. As an inherited neuromuscular disorder, SMA targets the motor neurons responsible for muscle movement. Type 1 is the most severe form, accounting for approximately 60% of all cases. Without modern medical intervention, the prognosis is often dire, as the condition affects the muscles critical for breathing and swallowing.
In the real world, the “nurse” role Nelson describes involves managing a multidisciplinary care team—including neurologists, physical therapists, and respiratory specialists. For instance, children with SMA often require specialized equipment like “cough assist” machines to clear their airways or gastrostomy tubes (G-tubes) if swallowing becomes unsafe. Nelson’s mention of “rapid tummy breathing” is a clinical indicator of respiratory distress common in SMA infants, where the diaphragm works overtime because the intercostal muscles between the ribs have weakened.
The urgency Nelson stresses regarding early treatment is backed by recent medical breakthroughs. While the article mentions there is “no cure,” the introduction of gene replacement therapies and SMN2-splicing modifiers has revolutionized outcomes. When these treatments are administered pre-symptomatically—often identified through newborn screening—many children now achieve motor milestones, such as sitting or even walking, that were previously considered impossible for Type 1 patients. Nelson’s public advocacy serves as a critical bridge between celebrity platform and public health education, potentially accelerating diagnoses for other families in similar positions.
