Former Little Mix singer Jesy Nelson made a profoundly emotional revelation on Thursday, sharing a touching video of her infant daughter Ocean that highlighted the daily realities of her twin girls' battle with a severe genetic condition. The 34-year-old artist, who welcomed twin daughters Ocean Jade and Story Monroe prematurely in May 2025 with former fiancé Zion Foster, disclosed last month that both babies have been diagnosed with Spinal Muscular Atrophy Type 1 (SMA1), a progressive neuromuscular disease.
The Heartrending Instagram Moment
Taking to her Instagram Stories on Thursday morning, Jesy posted a sweet clip showing Ocean smiling up at her mother after accidentally pulling out her feeding tube. The singer cooed at her daughter while reaching down to gently squeeze her cheeks, capturing a rare moment without the medical apparatus that has become a constant presence in their lives.
In a candid caption that resonated with thousands of followers, Jesy wrote: '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 everyday.'
The Devastating Diagnosis
Spinal Muscular Atrophy Type 1 causes progressive muscle weakness and wasting, requiring both twins to use feeding tubes due to severe swallowing, sucking, and breathing difficulties. The condition represents a daily medical challenge for the family, with Jesy describing the experience as an emotional rollercoaster that varies from 'really f***ing s***' days to slightly lighter moments.
Jesy has spoken openly about the heartbreaking reality that without timely treatment, SMA1 typically leads to death before age two. However, she maintains hope that her daughters will defy the odds now that they're receiving medical intervention.
Campaigning for NHS Screening Changes
The singer has become a passionate advocate for expanding newborn screening in the UK, campaigning for the NHS to include SMA1 testing in the standard heel prick test given to all babies. Her petition calling for government funding and fast-tracking of this process has already gathered over 120,000 signatures.
Jesy emphasizes that had her twins received the simple £1 test at birth and begun treatment earlier, their leg muscles might have been preserved. This advocacy work has become her primary focus, alongside caring for her daughters' complex medical needs.
Putting Music Career on Hold
Appearing on Heart FM's Breakfast show on Thursday, Jesy confirmed she has temporarily paused her music career to concentrate fully on her daughters. 'Look listen I’d never say never to music, but for me, my girls are my main focus,' she told hosts Amanda Holden and Jamie Theakston. 'I’ll be honest with you, I’ve not got time, I really don’t. They are my whole heart and soul and my main focus.'
The singer explained that her current priorities include continuing to advocate for SMA1 screening changes and supporting her daughters' strength development. 'That’s going to determine their future. That’s my main focus right now,' she stated emphatically.
The Daily Reality of SMA1 Care
Jesy has described the intense medical procedures her babies must endure daily as particularly challenging, confessing that administering necessary treatments often feels like she's hurting them when they cry and scream during the process. 'I never expected that to be part of my life and it's tough,' she told Daily Mail. 'They're so tiny and I have to do things which I know are doing them good but at the time, when they're crying and screaming, it feels like I'm hurting them.'
She added poignantly: 'I just want to be their mum.'
Understanding Spinal Muscular Atrophy
Spinal Muscular Atrophy is a genetic disease that weakens patients' strength by affecting motor nerve cells in the spinal cord, resulting in gradual muscle wasting. The severity varies by type:
- Type 1 SMA: Most severe form evident at birth; patients cannot sit and typically don't survive beyond age five
- Type 2 SMA: Intermediate form where sufferers cannot stand
- Type 3 SMA: Mild form making it difficult to rise from sitting position
- Type 4 SMA: Symptoms don't appear until adulthood, typically in 20s or 30s
Jesy's documentary 'Life After Little Mix,' released on Friday, addresses her babies' diagnosis alongside her decision to leave the band in 2020. Through her advocacy and personal revelations, she continues to raise awareness about SMA1 while navigating the profound challenges of parenting medically fragile children.
