Former Little Mix star Jesy Nelson was in tears as cameras caught the moment she was given her twin daughters’ devastating SMA diagnosis
Jesy Nelson appears in a brutally honest documentary called Life Changing(Image: Jesy Nelson/Instagram)
Jesy Nelson has candidly shared the devastating moment her twin girls were diagnosed with Spinal Muscular Atrophy (SMA) sobbing: “I don’t know how I’m going to do this.”
The heartbreaking scenes were captured as she filmed for her upcoming documentary, Jesy Nelson: Life Changing. The Amazon Prime Video cameras were on hand to capture the former Little Mix star’s reaction to the awful news as she said she “can’t believe this is happening”.
Doctors revealed the tots’ tests had come back positive. According to the NHS, SMA is “a rare genetic condition that can cause muscle weakness”. The organisation says the condition gets worse over time.
She revealed her whole life has changed, and she was predicted to struggle with the diagnosis. And Jesy is seen with her head in her hands as she says: “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.”
But she says she refuses to let anyone else feel her pain and is determined to change laws and regulations surrounding SMA testing. And she has continued to update her followers on her twins’ condition online as the documentary gets ready to air later this month.
In the caption for the trailer, Jesy wrote: “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.
“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.
“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 ended with a plea: “Please if you watch one thing, let it be this: “Jesy Nelson: Life Changing” on @primevideouk, streaming from July 17th.”
Last month, Jesy was in Parliament as MPs debated whether to test all newborns for spinal muscular atrophy. She joined forces with the Mirror to highlight her petition which was signed by over 150,000 people demanding all newborns are checked for spinal muscular atrophy.
Scotland introduced screening in March. However, a similar scheme for England will only have a limited roll-out. And Jesy expressed frustration after public health minister Sharon Hodgson defended the staggered launch.
Jesy said: “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.”
The decision, though, was defended by the public health minister, who had said limited testing facilities were preventing a full roll-out of screening for SMA.
The singer highlighted how late diagnosis of her own one-year-old twins meant they began treatment too late after irreversible nerve damage was done. She has since been told they will never walk.
Jesy Nelson: Life Changing will be shown on Prime from July 17
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