Jesy Nelson, the 34-year-old former Little Mix singer, voices deep frustration over delays in diagnosing her twin daughters with spinal muscular atrophy (SMA), a condition that could have proven fatal without prompt intervention.
The twins, Ocean Jade and Story Monroe Nelson-Foster, arrived prematurely in May 2024 after a challenging pregnancy that kept Nelson hospitalized for much of the time. Last month, she revealed their SMA diagnosis publicly, noting that the girls face lifelong mobility challenges and require urgent treatments to survive.
In an emotional social media video, Nelson explained that doctors warned the infants would not have lived without immediate care. She described the preceding three months as the most devastating period of her life, prompting her to share the story to raise awareness.
Early Warning Signs Overlooked
During a recent interview on Sky News’ The UK Tonight, Nelson detailed how her mother first spotted irregularities in the twins’ development at six months old, despite routine visits from health professionals. Symptoms like limited leg movement went unnoticed by health visitors and general practitioners during standard check-ups.
“People are starting to take notice and take it seriously, but it never should have took for me to come along for it to be taken seriously and that’s the part that makes me feel so angry,” Nelson told host Sarah-Jane Mee. “This isn’t just anything. This is a matter of life or death for someone’s child and who gets to decide that? Who has the right to decide whether my child is going to be in a wheelchair or not when we’ve literally had three life-changing treatments since 2018? The fact that it’s still a thing and we’re still having to scream and shout about it is just mad to me.”
Nelson highlighted missed opportunities during initial assessments. “The fact that there were healthcare visitors around my house a lot and we took them to the GP and not one of them saw any of the signs,” she shared. “Thank God for my mum, because I dread to think what position I’d be in now if my mum hadn’t have said anything to me. It’s one of them things that I constantly go over, and I have to sometimes stop myself from doing it because I will drive myself insane.”
She expressed profound sorrow over the twins’ future. “I don’t want people to think that if you’ve got disability that that defines you because it definitely doesn’t,” Nelson said. “But I’ll openly say if I could have it the other way, I definitely would. Why wouldn’t I want my children to walk and live a fulfilled life? I just pray that it does get changed and it does become part of the heel prick test, because the amount of heartbreak and hurt that I’ve had to endure, I’ll never be able to explain it.”
Symptoms of Spinal Muscular Atrophy
Spinal muscular atrophy affects individuals variably, but common signs include:
- Breathing or swallowing difficulties
- Muscle twitching or tremors
- Bone and joint issues, such as scoliosis
- Overall muscle weakness in arms and legs
- Movement challenges, like trouble sitting, crawling, or walking
Advocacy for Newborn Screening
Nelson actively campaigns for SMA to be added to the UK’s routine newborn heel prick test. “I will not stop on my socials talking about it. Trying to do as much TV…yes, it’s big but there’ll still be lots of other people that don’t know about this, so I’ve got to stay noisy,” she affirmed.
Appearing on This Morning last month, Nelson tearfully discussed the diagnosis, stating she would “never be able to get over it or accept it.” Addressing hosts Cat Deeley and Ben Shephard, she explained her decision to go public: “I always think if it was on the other shoe and I had seen someone else’s video, maybe I could have prevented this from happening and spotted it sooner. I feel like I have a duty of care… it feels selfish to keep this to myself and not potentially save a child’s life.”
Doctors informed Nelson that her daughters will likely never walk or regain full neck strength, relying on wheelchairs long-term. “When you know that there is something that could be done about it and it’s life changing, that’s something I cannot accept,” she added. “I’m still struggling. I just want to be their mum, I don’t want to be a nurse.”
Nelson thanked supporters for their encouragement. “I am genuinely so overwhelmed from the level of support, and I just want to say thank you for sharing, learning about it, took the time to watch it and send their beautiful messages, thank you I appreciate it so much,” she said.
Personal Life Update
Amid these challenges, Nelson and the twins’ father, Zion Foster—whom she began dating in January 2022—have parted ways. Reports indicate the couple remains amicable, prioritizing co-parenting and the girls’ well-being. They got engaged four months ago but are no longer wearing the ring, focusing entirely on providing the necessary care for Ocean and Story.
