Jesy Nelson has shared a quietly devastating moment from her life as a mother — one that has resonated deeply with parents across the country and offered a raw glimpse into the daily realities of caring for seriously ill children.
The former Little Mix star revealed that her baby daughter Ocean accidentally pulled out her feeding tube, prompting an emotional realisation that stopped her in her tracks. For a brief moment, Jesy was able to see her daughter’s face without the medical equipment she has become so accustomed to — and it left her reflecting on just how much most people take the smallest things for granted.
Jesy, 34, welcomed premature twin daughters Ocean Jade and Story Monroe in May 2025 with her former fiancé Zion Foster. Last month, she bravely shared the devastating news that both babies had been diagnosed with Spinal Muscular Atrophy Type 1 (SMA1), a rare and severe genetic neuromuscular condition.
“I forget what her little face looks like without it”
Taking to Instagram Stories, Jesy shared a short, tender clip of Ocean smiling up at her after accidentally dislodging her feeding tube. Gently squeezing her daughter’s cheeks, she wrote words that instantly struck a chord with fans:
“Ocean pulled out her feeding tube this morning. I forget what her little face looks like without it.
We really take for granted the little things. What I would give to see her little face like this every day.”
The candid moment offered a powerful insight into the emotional weight carried by parents of children with complex medical needs — where fleeting seconds of normality can feel overwhelming.
Living with SMA1: a daily battle
SMA1 causes progressive muscle weakness and wasting, affecting a child’s ability to move, swallow and breathe. As a result, both Ocean and Story rely on feeding tubes due to severe difficulties with sucking and swallowing.
Jesy has spoken openly about how confronting it can be to watch her babies undergo medical procedures, admitting that there are moments when it feels like she is hurting them — even though every intervention is necessary to keep them alive.
“I just want to be their mum,” she previously said, describing the experience as an emotional rollercoaster, with some days feeling almost unbearable and others offering small moments of light.
Stepping back from music to focus on motherhood
Since her daughters’ diagnoses, Jesy has temporarily stepped away from her music career to focus entirely on their care and future. Speaking on Heart FM’s Breakfast show, she explained that nothing else matters right now.
“My girls are my whole heart and soul,” she said. “I haven’t got time for anything else.
I want to continue advocating for them, getting this heel prick test changed, and getting them strong. That’s my main focus.”
Jesy believes earlier diagnosis through newborn screening could have significantly altered her daughters’ prognosis.
Campaigning for change
Alongside caring for her twins, Jesy has become a vocal campaigner for expanding the NHS newborn heel prick test to include screening for SMA1 — a test that costs around £1. Her petition calling for government funding and fast-tracking the process has already surpassed 120,000 signatures.
She has said that had her daughters been tested and treated earlier, some of the muscle damage they now face might have been prevented.
“They are going to defy the odds”
Despite the harrowing reality that untreated SMA1 can be life-limiting, Jesy remains fiercely hopeful. Speaking on Great Company with Jamie Laing, she said she believes her daughters will surprise everyone.
“My girls are the strongest, most resilient babies,” she said. “I really believe they are going to defy all the odds.”
Life, she admits, is now unpredictable, intense and emotionally exhausting — but it is also filled with brief, beautiful moments that keep her going.
“It’s not a steady journey,” Jesy said. “It’s a rollercoaster. I have to take each day as it comes.”
