Jesy Nelson's Emotional Journey with Twin Daughters' SMA1 Diagnosis
Former Little Mix singer Jesy Nelson has opened up about the profound emotional impact of caring for her twin daughters, who were diagnosed with Spinal Muscular Atrophy Type 1 (SMA1). The 34-year-old star revealed that she burst into tears upon receiving specially designed feeding chairs for Ocean Jade and Story Monroe, describing it as a stark reminder of the ongoing obstacles her family faces.
The Heartbreaking Reality of SMA1
Jesy welcomed her twin girls prematurely in May 2025 with her ex-fiancé Zion Foster. Last month, she shared the devastating news that both babies had been diagnosed with SMA1, a genetic neuromuscular disease that causes progressive muscle weakness and wasting. This condition has led to severe swallowing, sucking, and breathing difficulties, necessitating feeding tubes for the infants.
Taking to Instagram on Sunday, Jesy posted a photograph of one of the custom feeding chairs, which are engineered to provide essential postural support for children with special needs. In her caption, she expressed her sorrow, writing: 'So the girls need special feeding chairs that came yesterday and I couldn't help but burst into tears yesterday when I saw them. It just made me feel so sad as it's just another reminder of another obstacle we have to tackle.' She also reached out to other parents in similar situations, asking: 'Do any other SMA mummies feel this way?'
Advocacy and Campaigning for Change
Jesy Nelson is currently leading a significant campaign to expand the NHS standard heel prick test to include screening for SMA1. Her petition, calling for government funding and fast-tracking of this process, has already garnered over 120,000 signatures. She emphasizes that if her twins had undergone this test—which costs approximately £1—and received an earlier diagnosis and treatment, their leg muscles might have been preserved.
In her recent documentary, Life After Little Mix, Jesy discussed her daughters' diagnosis and the reasons behind her departure from the band in 2020. She has made it clear that her music career is on hold as she prioritizes her children's health and advocacy work. Appearing on Heart FM's Breakfast show, she told hosts Amanda Holden and Jamie Theakston: '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, and I want to continue advocating for them and getting this heel prick test changed and getting them strong, that’s my main focus.'
The Daily Struggles and Emotional Rollercoaster
Jesy has described the experience of caring for her twins as an emotional rollercoaster, with some days being particularly challenging. In an interview with the Daily Mail, she explained: 'There are a lot of medical things I have to do which I am still really struggling with, I'll be honest with you. I never expected that to be part of my life and it's tough.' She added that performing necessary medical procedures often leaves her feeling as though she is hurting her babies, as they cry and scream during the process.
When asked about a typical day with Ocean and Story, Jesy noted that no two days are alike emotionally. She said: 'I don't know how to explain my life in the day because sometimes it's really f***ing s*** and then, other times, I don't necessarily forget about their diagnosis but there are days [that] are lighter and they're not as heavy. So many mums have told me that's what it's going to be like and that's why I need to take each day as it comes. It's a rollercoaster; I don't feel like this is going to be a steady journey at all.'
Hope Amidst the Prognosis
Jesy has also addressed the tragic prognosis that children with SMA1 may not live beyond the age of two. Speaking on Jamie Laing's Great Company podcast, she expressed hope that her daughters will defy the odds now that they are receiving treatment. She explained: 'So spinal muscular atrophy is a muscular wasting disease, so they don't have a gene that we all have in our body. Their muscles are now deteriorating and wasting away, and if you don't get them treatment in time, eventually the muscles will all just die, which then affects the breathing, the swallowing, everything. And they will die before the age of two.'
Despite this grim reality, Jesy remains optimistic, stating: 'It's not OK, but it is what it is, and I just have to accept it, and now just try and make the best out of this situation... And my girls are the strongest, most resilient babies and I really believe that they are going to defy all the odds.'
Understanding Spinal Muscular Atrophy
Spinal Muscular Atrophy (SMA) is a disease that weakens a patient's strength by affecting the motor nerve cells in the spinal cord, leading to gradual muscle wasting. The severity of symptoms varies by type:
- Type 1 SMA is the most severe, evident at birth, with sufferers unable to sit and often leading to death by age five.
- Type 2 SMA is intermediate, preventing standing.
- Type 3 SMA is mild, making it difficult to rise from a sitting position.
- Type 4 SMA typically presents symptoms in adulthood, during the 20s or 30s.
Jesy Nelson's ongoing advocacy and personal resilience continue to shed light on the urgent need for improved screening and support for families affected by SMA1.
