Former Little Mix singer Jesy Nelson is calling for a reform of British newborn screening regulations after her 1-year-old twin daughters, Ocean Jade and Story Monroe, suffered irreversible nerve damage from a late Spinal Muscular Atrophy (SMA) diagnosis.
According to the National Health Service, SMA is a rare genetic condition that causes muscle weakness and worsens over time.
Nelson revealed that due to the late diagnosis, her twins began medical treatment too late and she has been informed that they will never walk.
The singer captured the medical discovery during filming for her upcoming Amazon Prime Video documentary series, titled "Jesy Nelson: Life Changing," which is scheduled to stream in the United Kingdom starting July 17.
In a filmed consultation, a doctor confirmed the genetic test results to Nelson. "The genetic testing came back positive for Spinal Muscular Atrophy," the doctor said.
Nelson held her head in her hands upon receiving the news. "I can't believe this is happening," she said.
The upcoming documentary series captures the former pop star sobbing and struggling to process the implications of the rare genetic condition on her family's future.
"I don't know how I'm going to do this. I feel like I'm going to be heartbroken for the rest of my life," Nelson said.
Nelson has launched an online campaign and continued updating her social media followers about her daughters' health status as the broadcast date approaches.
"I’m really not sure where to start with this one…All I can say is that I urge everyone to watch this documentary.
It’s the most heartbreaking series I’ve ever had to make, but it’s one that needed to be made if we’re ever going to see real change," she wrote in the trailer caption.
Nelson stated that the documentary offers a glimpse into the daily challenges children born with SMA endure.
"This is only a small glimpse into what my girls have to go through every single day.
It’s the reality that so many children born with SMA have to endure and this is only the beginning of their lives," she wrote.
The singer emphasized that early diagnostic measures are essential to alter health outcomes for newborn infants.
"I truly hope this helps people understand why the heel prick test and treatment from birth are so incredibly vital.
Early diagnosis can change EVERYTHING.
I’ll keep saying it until no family has to experience this again: no future babies born with SMA should have lives that look like this," she wrote.
Nelson concluded her online message with a direct recommendation for viewers to watch the upcoming series on Amazon's platform.
"Please if you watch one thing, let it be this: 'Jesy Nelson: Life Changing' on @primevideouk, streaming from July 17th," she wrote.
Last month, Nelson attended a debate in Parliament alongside the Mirror newspaper to present a petition signed by more than 150,000 people demanding universal newborn screening for SMA.
Scotland introduced the screening process in March, but England is executing a limited rollout due to restricted testing facilities.
Nelson expressed open frustration after Public Health Minister Sharon Hodgson defended the staggered launch during the parliamentary sessions.
"I cannot believe we are still debating this. You are basically telling me that if you live in a certain postcode, you're not as important.
It's outrageous," Nelson said.
