Singer Jesy Nelson is releasing a new documentary, "Life Changing," which features raw footage of the moment she learned her infant twins, Ocean and Story, were diagnosed with Spinal Muscular Atrophy (SMA) Type 1. The documentary, set to stream on Amazon Prime Video on July 17, aims to shed light on the severity of the rare muscle-wasting condition and the critical importance of early diagnosis.
Nelson revealed in January that her 13-month-old twins had been diagnosed with SMA Type 1, a condition that weakens muscles and, in its most severe form, can prevent sufferers from walking and often leads to death before the age of five. The late diagnosis for her daughters means they will likely require specialized equipment for breathing and feeding.
In an emotional clip from the documentary, Nelson is seen cradling her eight-week-old twins as a doctor delivers the news of their positive genetic test results for SMA. "I can't believe this is happening," Nelson tells the camera, tears welling up. "It's the most severe muscle disease a baby can have. I don't know how we are going to do this. I feel like I'm going to feel heartbroken for the rest of my life."
Advocacy for Universal Screening
The singer has been actively campaigning for universal newborn screening for SMA across England. Last month, she attended a parliamentary debate on the issue, which resulted in a staggered rollout of the screening program. While the program is set to be introduced in October, only 72 percent of the country will have access to it, leaving the remaining 28 percent without.
Nelson expressed her deep disappointment with the outcome, calling it a letdown. She questioned the fairness of the decision, stating, "Based on where you live, how does that make sense? How is that fair?" She highlighted that the decision implies that children's lives are valued differently depending on their location within England.
The parliamentary debate was initiated by a petition Nelson launched, which garnered over 150,000 signatures. The staggered rollout, advised by the UK National Screening Committee, is intended to allow for evaluation of the screening's effectiveness and cost to the National Health Service. However, areas such as Bristol, Cambridge, Leeds, Liverpool, Oxford, and Portsmouth will not be included in the initial phase, which will involve seven of the NHS's 13 available testing laboratories.
Nelson directly addressed Sharon Hodgson, the Parliamentary Under-Secretary of State in the Department of Health and Social Care, questioning her reasoning. Nelson emphasized that evidence shows early treatment from birth can be life-changing for children with SMA, while untreated children may not survive past their second birthday. She shared a video with Hodgson showing two sisters with the same SMA diagnosis: one treated from birth and progressing well, while the other, untreated, was in a wheelchair. Hodgson reportedly expressed surprise at the effectiveness of the treatment after viewing the video.
"You are basically telling me that if you live in a certain postcode, you're not as important as the other 72% of England. Your life doesn't matter as much. It's outrageous," Nelson stated, conveying her outrage as a mother of two children with SMA Type 1.
She further elaborated on the daily challenges faced by families with SMA, including the need for constant monitoring, medication, and assistance with basic functions like swallowing and breathing due to muscle weakness. "To know that there are people that are literally making this decision to make children suffer. I have no words," she said.
Other parliamentarians also voiced concerns. Amanda Martin, MP for Portsmouth North, questioned why babies born in Portsmouth were considered less important than those in other areas. Ruth Jones, MP for Newport West and Islwyn, pointed out that Ukraine had managed to begin newborn screening for SMA even during wartime, questioning the UK's delay.
Nelson hopes her documentary will foster greater understanding of SMA and advocate for vital policy changes. "I truly hope this helps people understand why the heel prick test and treatment from birth are so incredibly vital," she wrote. "Early diagnosis can change EVERYTHING."