Jesy Nelson shares devastating moment she learned of twin daughters' rare diagnosis
Jesy Nelson has shared the devastating moment she learned her twin daughters have a rare genetic condition.
Nelson, 35, broke down in front of cameras for upcoming Prime Video documentary Jesy Nelson: Life Changing, admitting she would be “heartbroken for the rest of my life” following their diagnosis.
Nelson was understandably emotional after the diagnosis was confirmed. Prime Video
In January, Nelson revealed her one-year-old girls, Ocean Jade and Story Monroe, have spinal muscular atrophy (SMA) Type 1, a genetic neuromuscular disorder that causes progressive muscle weakness and wasting.
Due to the severity, Nelson has been told the twins are unlikely to ever walk. They also have specialist equipment to help them breathe at night.
The documentary trailer includes the moment the former Little Mix singer was told about their condition.
“I can’t believe this is happening,” she reacted, with her head in her hands.
“I don’t know how we’re going to do this. I feel like I’m going to feel heartbroken for the rest of my life.”
The documentary, releasing July 17, will also document Nelson’s advocacy for earlier and better screening of SMA in newborns.
Sharing the documentary to Instagram, Nelson said: “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.”
Nelson's daughters, Ocean and Story, recently turned one. Instagram/@jesynelson
Earlier this year, Nelson started a petition for more health checks, which reached more than 150,000 signatures.
The then-UK Health Secretary Wes Streeting later confirmed screenings for SMA would begin in October 2026.
However, rollout will initially only cover 72 per cent of babies, with Nelson now campaigning for 100 per cent coverage.
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