Jesy Nelson shares devastating twin SMA diagnosis moment
Jesy Nelson has shared devastating footage of the moment a doctor told her genetic testing confirmed spinal muscular atrophy in her twin daughters, captured in her Amazon Prime documentary Jesy Nelson: Life Changing. The former Little Mix star, 35, broke down and said she would be heartbroken for the rest of her life.
The clip has drawn widespread attention as Nelson uses her platform to push for stronger UK newborn screening rules. For more stories on high-profile cases and public reckonings, see our True Crime & Unsolved Mysteries coverage.
Key Takeaways
- Medics confirmed on camera that Jesy Nelson's twins tested positive for spinal muscular atrophy (SMA).
- The moment is shown in Jesy Nelson: Life Changing, streaming on Prime Video UK from 17 July.
- Nelson's twins are Ocean Jade and Story Monroe, who were diagnosed with the rare condition.
- She is campaigning for newborn SMA screening after a petition gained more than 150,000 signatures.
- Nelson says early diagnosis through the heel prick test can change everything for families.
What happened when Jesy Nelson learned her twins' diagnosis?
In the video, a doctor tells Nelson: "The genetic testing came back positive for Spinal Muscular Atrophy." At that moment, she buries her face in her hands and says: "I can't believe this is happening."
She adds: "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." The Amazon Prime Video crew filmed the former Little Mix member as she was forced to face the reality of the situation.
According to the NHS, SMA is a rare genetic condition that can cause muscle weakness and deteriorates over time. The health service's spinal muscular atrophy guidance explains how the disorder affects movement over time.
Why is Jesy Nelson releasing Jesy Nelson: Life Changing?
The Independent reports that cameras followed Nelson for Jesy Nelson: Life Changing as she fights to change UK newborn screening laws. It comes after her twins, Ocean Jade and Story Monroe, were diagnosed with the rare condition.
In her trailer caption, Nelson wrote that she urges everyone to watch the documentary. She called it the most heartbreaking series she has ever had to make, but one that needed to be made if we are ever going to see real change.
She said the footage is only a small glimpse into what my girls have to go through every single day, adding that it is the reality that so many children born with SMA have to endure.
How is Jesy Nelson campaigning for SMA screening?
Daily Star reporting notes that Nelson will not allow others to go through the same pain and is campaigning for laws and guidelines around SMA screening. Last month, she was at Westminster as MPs discussed whether to screen all newborns for spinal muscular atrophy.
Her petition calling for all newborn babies to be tested for the condition garnered more than 150,000 signatures. She has kept fans updated on her children's conditions on social media ahead of the documentary, which airs later this month.
Nelson concluded her appeal by asking viewers to watch Jesy Nelson: Life Changing on Prime Video UK, streaming from 17 July. She stressed that early diagnosis can change EVERYTHING and vowed to keep saying it until no family has to experience this again.