Jesy Nelson posted a sweet video of her twin daughters holding hands on Tuesday. This came after she shared that she had been very upset over the weekend while dealing with their difficult health issues.
Leigh-Anne Pinnock, 34, and her former fiancé, Zion Foster, became parents to twin daughters, Ocean Jade and Story Monroe, in May 2025. The babies arrived prematurely.
I was heartbroken to learn last month that both of the babies were diagnosed with Spinal Muscular Atrophy Type 1, or SMA1 – a really serious genetic condition affecting their muscles. It was just devastating news, and I’ve been thinking of them ever since.
As a lifestyle expert, I often talk about maintaining physical well-being, and it’s heartbreaking when conditions impact that. This one specifically weakens your muscles because it affects the nerve cells that control them, located in your spinal cord. The most common and serious form, Type 1, is particularly challenging – without treatment, it sadly significantly shortens life expectancy, often to less than two years.
Jesy Nelson bravely discussed her children’s difficult health diagnosis in her documentary, Life After Little Mix, and frequently provides updates on their progress via Instagram.
On Tuesday morning, she shared a sweet video on Instagram Stories of her twin daughters lying in their bassinets, reaching for and holding each other’s hands.
The singer shared a heartwarming video set to Ben E. King’s “Stand By Me,” showing her daughters peacefully asleep while holding hands.
Jesy recently shared a touching moment – she was moved to tears on Saturday when she first saw the custom feeding chairs made for her children.
Because SMA1 gradually weakens and shrinks their muscles, Ocean and Story need feeding tubes to help them eat since they have trouble swallowing, sucking, and breathing. They also require special chairs to help them sit up straight and maintain good posture.
When the two chairs were delivered, their mother cried, explaining they symbolized yet another challenge in their ongoing health struggles.
As a mom, I totally get those unexpected emotional moments! We just got the high chairs for the girls, and honestly, seeing them arrive yesterday just hit me hard – I couldn’t help but cry. It’s amazing how something so simple can bring on such big feelings when you’re a parent.
It was really disheartening, just another challenge on top of everything else. I’m wondering if other moms of children with SMA feel the same way?
In addition to being a mother, Jesy is actively advocating for the NHS to include screening for Spinal Muscular Atrophy type 1 (SMA1) in the newborn heel prick test.
She believes her twins might have kept their legs if they’d had a simple, roughly £1 test and received treatment sooner.
The celebrity has launched a petition that has gained over 100,000 signatures, which legally requires Parliament to discuss the issue. The petition asks the government to provide funding and speed up a particular process.
While advocating for a specific medical screening to be added to newborn tests for her daughters, Jesy has put her music career on hold.
Speaking on Heart FM’s breakfast show with Amanda Holden and Jamie Theakston, she said she wouldn’t rule out making music again, but her daughters are her top priority right now.
To be honest, I’m incredibly busy right now. My children are my absolute priority, and I’m completely dedicated to supporting them. I’m focused on fighting for a change to the heel prick test and helping them thrive – that’s what matters most to me.
‘Because that’s going to determine their future. That’s my main focus right now.’
She told the Daily Mail that raising the twins has been a very emotional experience, with some days being incredibly difficult and others a little easier.
Jesy shared that she and Zion didn’t anticipate having to care for their children like this, and covering the costs of their medical care is a constant challenge.
She described the daily medical treatments her children have to go through, explaining how their crying and screaming make her feel like she’s the one causing them pain.
Jesy told the Daily Mail that it’s hard to describe how demanding her daily life is – you really have to experience it yourself to understand.
To be honest, I’m still finding it really difficult to manage some ongoing medical issues. It’s something I never anticipated dealing with, and it’s been a real challenge.
It’s hard because they’re so small, and even though I know what I’m doing is ultimately helpful for them, it’s really upsetting when they cry and scream. It feels awful to be the one causing them distress, and I just wish I could always be the comforting parent they need.
Jesy explained that it’s hard to describe a typical day with her twin daughters because every day feels different emotionally.
It’s hard to describe what my life is like day to day. Some days are incredibly difficult, while on others, though I don’t forget about the diagnosis, things feel a little easier and less overwhelming.
Many mothers have warned me it will be an emotional experience, so I’m trying to focus on getting through each day as it comes. I expect it to be full of ups and downs, not a smooth or predictable process.
She also spoke about the heartbreaking news that Ocean and Story might not survive past their second birthdays.
Jesy Nelson recently told Jamie Laing on his podcast, Great Company, that she’s optimistic her children will overcome challenges thanks to the care they’re now receiving.
Spinal muscular atrophy is a condition that causes muscles to weaken and waste away. It happens because people with this condition are missing a gene that most people have.
Their muscles are weakening and shrinking, and without prompt treatment, they will eventually stop working altogether. This impacts essential functions like breathing and swallowing, and tragically, these children typically don’t survive past the age of two.
Things aren’t ideal, but I’m accepting the situation and focusing on making the best of it. I’m especially hopeful because my daughters are incredibly strong and I truly believe they’ll overcome any challenges they face.
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2026-02-24 15:04