Jesy Nelson has given fans a deeply emotional glimpse into one of the darkest moments of her life by sharing the instant she discovered that her twin daughters had been diagnosed with Spinal Muscular Atrophy (SMA).
The former Little Mix star, 35, released the trailer for her upcoming Amazon Prime documentary Jesy Nelson: Life Changing on Thursday, with the film set to premiere on July 17.
The trailer includes raw footage captured when Jesy and her partner were informed that their daughters, Ocean and Story, had tested positive for SMA Type 1, the most severe form of the rare muscle-wasting disease.
Holding her eight-week-old babies as a doctor delivers the devastating news, Jesy is told: “The genetic testing came back positive for Spinal Muscular Atrophy.”
Unable to hold back her emotions, the singer breaks down on camera.
“I can’t believe this is happening. It’s the most severe muscle disease a baby can have,” she says.
Fighting through tears, she continues: “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.”
Jesy first revealed in January that Ocean and Story, now 13 months old, had been diagnosed with SMA Type 1. Because the condition was discovered too late, the twins are expected to face lifelong challenges. They are unlikely to ever walk independently and currently rely on specialist breathing equipment during the night as well as feeding tubes.
The documentary also highlights how dramatically the diagnosis has changed Jesy’s daily life.
“I get bombarded with hospital appointments, my whole life has changed,” she says in another emotional moment from the trailer.
Alongside the preview, Jesy explained why she felt compelled to make the documentary despite how painful the experience was.
“I’m really not sure where to start with this one… All I can say is that I urge everyone to watch this documentary.”
She continued: “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.”
Jesy said the documentary only offers a small insight into what her daughters experience every single day.
“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.”
The singer once again stressed the importance of newborn screening, arguing that early diagnosis can completely transform a child’s future.
“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.”
She added: “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.”
The documentary arrives just weeks after Jesy attended Parliament to campaign for newborn SMA screening across England.
Although her petition attracted more than 150,000 signatures, the Government confirmed that only around 72 per cent of England will initially receive newborn screening when the programme begins in October, leaving the remaining 28 per cent without immediate access.
Following the debate, Jesy admitted she was devastated by the decision.
“I’m going to be completely honest, I was absolutely fuming. I feel so let down.”
She continued: “Our children’s lives could look so different, and to know that we are still debating it… Based on where you live, how does that make sense? How is that fair?”
The documentary Jesy Nelson: Life Changing will begin streaming on Amazon Prime Video on July 17 and aims to raise awareness of SMA while continuing Jesy’s campaign for universal newborn screening.
