Jesy Nelson has opened up about the moment her "whole life changed" in an emotional trailer for her upcoming Amazon Prime Video documentary.
In a clip shared to her Instagram, the former Little Mix singer gives fans an insight into the journey she has been on since her twin daughters, Ocean and Story, were diagnosed with spinal muscular atrophy (SMA).
"I can't believe this is happening," Jesy says in the trailer after her children's doctor gives her the tragic news. "It's the most severe muscle disease a baby can have."
"I don't know how we are going to do this," she added of the life-changing diagnosis. "I feel like I'm going to feel heartbroken for the rest of my life."
According to the NHS, SMA is a rare genetic condition that can cause muscle weakness, movement problems, difficulty breathing or swallowing, tremors, and bone and joint issues. It gets worse over time, but there are medicines and other treatments to help manage the symptoms, particularly if it is diagnosed early enough. This is something Jesy is campaigning to make happen.
The newborn blood spot test checks for 10 rare conditions, but it currently doesn't test for SMA. Jesy and the likes of Spinal Muscular Atrophy UK want all newborns to be screened for the disease to give them a chance at the best life possible.
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"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," the singer wrote in the caption on Instagram. "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."
Previously speaking about her twins' diagnosis, Jesy said in January of this year she had been told they are "probably never going to be able to walk."
"They probably will never regain their neck strength, so they will be disabled," she went on.
Although it took "the most gruelling three, four months, and endless appointments" to get a diagnosis, Ocean and Story were given treatment for the condition, which Jesy expressed her gratitude for. "Because if they don't have it, they will die," she revealed.
Despite her twins' heartbreaking diagnosis, Jesy said at the time she hopes they will "defy all the odds" and "will fight this."
Jesy Nelson: Life Changing streams on Prime Video UK from July 17.
