In a heartbreaking revelation, former Little Mix star Jesy Nelson has shared the news that her twin daughters, Ocean Jade and Story Monroe Nelson-Foster, have been diagnosed with Spinal Muscular Atrophy (SMA) Type 1, a rare genetic condition that may severely limit their physical abilities.
The 34-year-old singer, who welcomed the twins prematurely last May with her fiancé Zion Foster, opened up about the “gruelling three/four months” leading up to the diagnosis in an emotional Instagram video earlier this month. Nelson explained that after an “endless” series of appointments, her daughters were confirmed to have “a severe muscle disease called SMA Type 1.”
Determined to raise awareness and advocate for change, Nelson has started campaigning for SMA1 screening to be included in the newborn blood spot screening test, also known as the heel prick test. In a poignant conversation with Health Secretary Wes Streeting on ITV’s This Morning, Nelson expressed her disbelief that “we have got three treatments that are life-changing, and it’s still not part of the heel prick test.”
Giles Lomax, CEO of Spinal Muscular Atrophy UK (SMA UK), provided a comprehensive overview of the condition, which he described as “a rare neuromuscular condition” affecting approximately “one in 14,000 births per year.” Lomax explained the genetic and hereditary nature of SMA, noting that “there’s a one in four chance that your mum and dad could pass on the faulty SMN1 genes, which is what then means that you have SMA.”
The four primary types of SMA, each with distinct characteristics, were outlined by Lomax. Type 1, the most severe form, typically manifests in babies under six months old, with symptoms including “really floppy infants that have difficulty breathing, coughing and swallowing,” and the inability to sit or go beyond the lying phase.
Reflecting on the prognosis from Great Ormond Street Hospital, Nelson shared the heartbreaking reality that her daughters “are probably never going to be able to walk, they probably will never regain their neck strength, so they will be disabled.” However, she expressed profound gratitude that her daughters have received treatment, acknowledging that “if they don’t have it, they will die.”
Jesy Nelson’s candid revelation underscores the profound challenges faced by families navigating a diagnosis of Spinal Muscular Atrophy. While the journey ahead for Ocean Jade and Story Monroe will undoubtedly be arduous, the availability of disease-modifying therapies offers a beacon of hope, transforming the outlook for children born with this rare and severe condition.
