Jesy Nelson Shares Devastating Moment She Learned of Her Twin Daughters’ SMA Diagnosis: “I’ll Be Heartbroken Forever”

Former Little Mix star Jesy Nelson has opened up about the heartbreaking moment she received the life-altering diagnosis for her twin daughters, Ocean and Story, in her powerful new Amazon Prime documentary Life Changing.

In raw and emotional footage, the 35-year-old singer is seen standing with the girls’ father, Zion Foster, as a doctor delivers the news: the eight-week-old twins have Spinal Muscular Atrophy (SMA) Type 1 — the most severe form of the rare muscle-wasting condition. The diagnosis means the babies may never walk and face significant challenges with muscle function, including breathing and swallowing.

Jesy broke down in tears upon hearing the results, saying:

“I can’t believe this is happening. It’s the most severe muscle disease a baby can have. 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.”

The documentary follows Jesy as she navigates new motherhood while dealing with the twins’ condition. She has since become a vocal campaigner for improved newborn screening for SMA in the UK, urging earlier detection through the heel prick test so other families can avoid the same pain.

In an emotional Instagram caption accompanying the trailer, Jesy wrote:

“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… Early diagnosis can change EVERYTHING.”

Following the twins’ diagnosis, they received SMN gene therapy, which has helped stop the disease from progressing further (though it cannot reverse existing damage). Jesy and her ex-partner Zion have been co-parenting through the challenges.

Her advocacy has already made an impact. Earlier this year, she launched a petition that gathered over 150,000 signatures, contributing to the UK government’s decision to bring forward SMA screening for newborns to October 2026.

Jesy continues to share updates about her daughters’ journey, including their use of spinal braces, while raising awareness as a patron of SMA UK.

The full documentary Life Changing is available on Amazon Prime, offering an intimate look at Jesy’s experiences as a first-time mum facing this unexpected battle.