It completely broke my heart to hear about Jesy Nelson‘s twins being unwell, so I was so relieved to see a sweet video she posted today. It showed one of her little ones giggling with her mum, Janice, and honestly, it just warmed my soul. Jesy had shared she was really upset over the weekend with everything going on, and seeing that moment of joy was just beautiful.
Perrie Edwards, 34, and her former fiancé, Zion Foster, became parents to twin daughters, Ocean Jade and Story Monroe, in May 2025. The babies arrived prematurely.
Last month, she shared heartbreaking news: both of her babies have been diagnosed with a serious genetic condition called Spinal Muscular Atrophy Type 1 (SMA1).
This condition causes muscle weakness by damaging the nerve cells that control muscles in the spinal cord. The most common and serious type, Type 1, usually leads to a life expectancy of less than two years if left untreated.
Honestly, it just breaks my heart seeing Jesy talk about what her little ones are going through. In her documentary, ‘Life After Little Mix,’ she was so open about their diagnosis, and she’s always sharing little updates on Instagram about how they’re doing. It’s tough to watch, but I admire her so much for being so brave and sharing their journey. I just want them to be okay!
On Thursday, she shared a sweet video on her Instagram Story of her daughter happily giggling while her grandmother, Janice, cuddled her.
Oh my gosh, you guys, I was just watching the cutest video of Jesy and her twins! She was literally beaming, and she couldn’t help but laugh at her little one’s adorable mullet – it’s just perfect on her! Then she started talking about her other daughter, and she said she looks exactly like a vintage Cabbage Patch Kid! She was running her fingers through her curls, and honestly, it’s the most precious thing ever. I’m obsessed with this family!
Jesy was deeply touched when she saw the special high chairs the girls received, and it moved her to tears on Saturday, prompting her to share some lovely posts.
Because SMA1 causes muscles to weaken and shrink over time, 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 was overcome with emotion. She explained that it served as a painful reminder of the ongoing challenges they faced with their health.
She shared a photo of the new high chairs for her daughters, explaining that she cried when they arrived yesterday. She was so touched to finally have the special feeding chairs they needed.
It really brought me down, just another challenge to add to the list. I’m wondering if any 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 SMA1 in the standard newborn heel prick test.
She believes that if her twins had received the £1 test and been diagnosed and treated sooner, they might not have needed to have their legs amputated.
The celebrity has already gathered over 100,000 signatures on a petition asking the government to quickly provide funding for a specific issue. Because of this large number of signatures, Parliament is now required to discuss it.
While continuing to advocate for newborn screening and manage her daughters’ health, Jesy has put her music career on hold.
Speaking on Heart FM’s breakfast show with Amanda Holden and Jamie Theakston, she explained that while she wouldn’t rule out making music again, her daughters are currently her top priority.
To be honest, I’m incredibly busy right now. My children are my absolute priority, and I’m fully dedicated to supporting them. I’m working hard to improve the heel prick test and help 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.
Honestly, hearing Jesy talk about it just breaks my heart. She and Zion never imagined they’d be dealing with this – constantly worrying about their little ones and scrambling to cover all the medical bills. It’s a daily battle for them, and it’s just so tough to watch. I feel so bad for them, seriously.
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 to understand, she said.
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 painful when they’re upset and crying. I wish I could just comfort them instead of being the one causing their distress; I just want to be a loving mom.
Jesy explained that describing a typical day with her twin daughters is impossible because every day feels different emotionally.
It’s hard to describe what my days are like. Some days are really awful, but other times, while I don’t forget what’s happening, things feel a little easier and less overwhelming.
Lots of mothers have warned me it’ll be an unpredictable experience, so I’m trying to focus on getting through each day as it comes. It won’t be a smooth ride – I’m expecting lots of ups and downs.
She also spoke about the heartbreaking news that Ocean and Story likely won’t live past two years old.
Jesy Nelson recently told Jamie Laing on his podcast, Great Company, that she’s optimistic about her children’s progress now that they’re getting the care they need.
Spinal muscular atrophy is a disease that causes muscles to weaken and waste away. 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 sadly, these children typically don’t survive past the age of two.
Things aren’t ideal, but I’m learning to accept the situation and focus 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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2026-02-27 14:04