Jesy Nelson recalls moment her world 'fell apart' after twins' SMA diagnosis

Life can take unexpected turns, and no one knows it better right now than Jesy Nelson. After four years together, Jesy and her partner Zion Foster decided to go their separate ways, not long after their twin daughters, Ocean Jade and Story Monroe, were diagnosed with a rare genetic disorder. Jesy described this life-changing period saying her "world fell apart," a feeling many parents may relate to when faced with a child's health crisis. But what exactly caused this celebrity couple to end their relationship just four months after getting engaged ?

The pop singer's journey, now featured in the Prime Video series Jesy Nelson : Life After Little Mix, pulls the curtain back on the highs and lows of parenthood, a sudden diagnosis, and the pressure it put on their union. In the most challenging chapter of her life so far, Jesy has chosen to step forward and use her story to help other families facing similar battles.

When a diagnosis changes everything : SMA type 1 and a family's heartbreak

The dramatic shift in Jesy and Zion's world came six months after the birth of their twin girls. Ocean Jade and Story Monroe were diagnosed with spinal muscular atrophy type 1 (SMA Type 1), a rare and severe muscle-wasting disease. The news hit hard. Jesy didn't mince her words, describing the experience as "traumatising".

Throughout her pregnancy, life was already tense. Jesy discovered her twins were monochorionic diamniotic (MCDA) and faced twin-to-twin transfusion syndrome (TTTS), both of which come with worrying risks. She hoped the storm had passed after their birth, only for the SMA diagnosis to emerge half a year later.

Despite their love, the couple found themselves drifting apart. The constant care, uncertainty, and emotional weight was simply overwhelming for both. As Jesy openly states, their "priority is now the well-being and education" of their daughters. Parenting twins with SMA has reshaped every corner of her life, and their newfound focus is on providing the best possible quality of life for the girls.

Advocacy, awareness and hope : Jesy’s next fight

Jesy is turning her personal pain into purpose. Regretting that no early test was done at birth for her daughters' condition, she’s championing neonatal screening for SMA across the UK. Jesy has become a campaigner, insisting that early diagnosis—achievable through the simple Guthrie heel-prick test—could give other children a far better chance. She expresses genuine frustration, reflecting : “I just wish my girls had been screened sooner.”

The series Jesy Nelson: Life After Little Mix tracks her pregnancy, the emotional tidal wave of the diagnosis, and her relentless efforts to shine a light on these important health issues. She’s also brought Health Secretary Wes Streeting into the conversation, pushing for change and more robust policies to support affected families.

Jesy admits she never imagined motherhood for herself, yet now calls her twins her greatest purpose. The split from Zion Foster was, according to her, amicable—they share a commitment to parenting Ocean Jade and Story Monroe together, whatever comes next. Her candid storytelling and advocacy offer hope for other parents and bring much-needed visibility to SMA and the urgent need for routine newborn screening.

The fan community rallies around Jesy

In these difficult moments, Jesy’s fans have made their support clear. Her openness and advocacy haven’t gone unnoticed by communities touched by similar diagnoses. The Prime Video documentary doesn’t flinch from showing the raw reality—the setbacks, but also the everyday moments of hope and resilience. For Jesy Nelson, this chapter is about using her profile for something bigger : changing the landscape for future parents and children facing SMA.

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Jesy Nelson reveals the heartbreaking reason behind her split from fiancé Zion Foster as she recalls moment her world 'fell apart' following her twin daughters' SMA diagnosis