Jesy Nelson Announces Documentary While Campaigning for Newborn SMA Testing
Former Little Mix singer Jesy Nelson has revealed a new television documentary project as she intensifies her campaign to include spinal muscular atrophy (SMA) testing in standard newborn heel prick examinations. The announcement comes following the heartbreaking diagnosis of her nine-month-old twins, Ocean Jade and Story Monroe, who face a prognosis that may limit their lives to under two years.
Documenting a Personal Journey to Drive Change
Speaking in London ahead of the release of her Amazon Prime documentary, Jesy Nelson: Life After Little Mix, the thirty-four-year-old artist explained her decision to continue filming despite the tragic circumstances. In a recent Q&A session, Nelson expressed her hope that audiences will follow the next chapter of her family's journey.
'When the girls received their diagnosis, we made the conscious choice to keep the cameras rolling,' Jesy stated. 'As difficult as it was, we believed there must be a purpose to their presence here, and we are determined to extract every positive from this situation.'
Nelson emphasised that her primary objective remains advocating for SMA to become a standard part of the heel prick test administered to all newborns across the NHS. 'Alongside caring for my beautiful daughters, my main focus is pushing for this crucial change in screening protocols,' she affirmed.
Understanding Spinal Muscular Atrophy and Its Impact
Spinal muscular atrophy is a genetic neuromuscular disorder characterised by progressive muscle weakness and deterioration due to the loss of motor neurons. Type 1 SMA, the most severe form, often manifests at birth and can lead to death before the age of five if untreated.
Jesy detailed the condition's effects during an appearance on Jamie Laing's Great Company podcast. 'Spinal muscular atrophy is a muscular wasting disease where affected individuals lack a specific gene present in healthy bodies,' she explained. 'Without timely intervention, muscles deteriorate, impacting breathing, swallowing, and ultimately leading to fatality before the age of two.'
Despite the grim outlook, Nelson remains hopeful that her daughters will defy expectations through ongoing treatment. 'My girls are incredibly strong and resilient babies, and I genuinely believe they will overcome these daunting odds,' she declared.
Advocating for Affordable and Accessible Testing
Jesy Nelson has publicly called upon the National Health Service to expand its standard heel prick test to include screening for spinal muscular atrophy. She highlighted that each test costs approximately one pound, arguing that early detection could have preserved her twins' leg function with prompt treatment.
The singer also disclosed that her twins experienced twin-to-twin transfusion syndrome (TTTS) during pregnancy, a rare condition affecting identical twins sharing a single placenta. This complication, combined with their premature birth at thirty-one weeks, compounded their health challenges.
'TTTS impacts a small percentage of identical twins, where uneven nutrient distribution threatens both babies' survival,' Jesy noted. 'Without treatment, there is a ninety-five percent mortality rate, making early intervention critical.'
Types of Spinal Muscular Atrophy Explained
- Type 1 SMA: The most severe form, evident at birth, prevents sitting and often results in death by age five.
- Type 2 SMA: An intermediate variant where sufferers cannot stand independently.
- Type 3 SMA: A milder type causing difficulty rising from a seated position.
- Type 4 SMA: Symptoms typically emerge in adulthood, during the twenties or thirties.
Jesy Nelson's documentary aims to raise awareness and foster change, leveraging her platform to advocate for improved newborn screening. 'I am thrilled we have documented this entire experience because I am confident it will catalyse meaningful change,' she concluded. 'This programme will further illuminate the challenges we have faced and the dedication of those supporting our cause.'
