Jesy Nelson, the former Little Mix star, posted a heartwarming Instagram video on Wednesday showing one of her twin daughters giggling joyfully as she plants a gentle kiss on the baby’s forehead.
The 34-year-old singer welcomed daughters Ocean Jade and Story Monroe prematurely in May 2025 with her ex-fiancé, Zion Foster. Last month, both girls received a diagnosis of Spinal Muscular Atrophy Type 1 (SMA1), a severe genetic neuromuscular disease that weakens muscles by impacting motor nerve cells in the spinal cord. Without treatment, Type 1 SMA carries a life expectancy of less than two years.
In the video, the baby squeals with delight every time Jesy coughs, prompting laughter from the singer. Jesy captioned the clip: ‘Why does she find coughing so funny’ followed by a laughing face emoji.
Emotional Challenges with Twins’ Care
Jesy recently shared her emotional reaction to receiving special feeding chairs for the twins. Due to progressive muscle weakness from SMA1, Ocean and Story rely on feeding tubes for swallowing and breathing difficulties and require custom chairs for postural support. Seeing the chairs arrive brought Jesy to tears, as she described it as ‘another reminder of another obstacle we have to tackle.’
She asked other SMA parents: ‘Do any other SMA mummies feel this way?’
Campaign for Newborn SMA Screening
Jesy actively campaigns for the NHS to include SMA1 screening in the standard heel prick test, which costs around £1. Early detection and treatment could prevent leg muscle deterioration, she explains. Her petition has surpassed 100,000 signatures, compelling Parliament to consider it for debate.
Prioritizing Family Over Music Career
While advocating for change and managing her daughters’ needs, Jesy has paused her music career. On Heart FM’s Breakfast show with hosts Amanda Holden and Jamie Theakston, she stated: ‘Look listen I’d never say never to music, but for me, my girls are my main focus. 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.’
Caring for the twins presents an emotional rollercoaster. Jesy describes daily medical procedures as intense, noting: ‘Every day is so full-on… There are a lot of medical things I have to do which I am still really struggling with… 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.’
No two days feel the same, with some ‘really f***ing s***’ and others lighter. She takes each day as it comes.
On Jamie Laing’s Great Company podcast, Jesy expressed hope: ‘My girls are the strongest, most resilient babies and I really believe that they are going to defy all the odds.’
What is Spinal Muscular Atrophy?
Spinal Muscular Atrophy (SMA) weakens muscles by affecting motor nerve cells in the spinal cord, leading to gradual wasting. Severity varies:
- Type 1: Most severe, evident at birth; sufferers cannot sit, often fatal by age five without intervention.
- Type 2: Intermediate; unable to stand.
- Type 3: Milder; difficulty rising from sitting.
- Type 4: Symptoms appear in adulthood.
