Jesy Nelson was moved to tears when she received a reminder of the challenges she faces as a mother, especially after recently assembling special feeding chairs for her twin daughters who have been diagnosed with Spinal Muscular Atrophy type 1 (SMA1).
Perrie Edwards, 34, and her former fiancé, Zion Foster, became parents to twin daughters, Ocean Jade and Story Monroe, in May 2025. The twins were born prematurely.
Last month, she shared the heartbreaking news that her two babies both have Spinal Muscular Atrophy Type 1, a serious genetic condition affecting their muscles.
Because Spinal Muscular Atrophy type 1 (SMA1) gradually weakens their muscles, the girls require feeding tubes to help them eat, as they have significant trouble swallowing, sucking, and breathing.
On Sunday, the singer shared on Instagram that the special high chairs for her daughters had been delivered.
She shared a photo of the new chairs her daughters needed, explaining they arrived yesterday. These chairs are specially designed to help children with posture during mealtimes, and seeing them brought her to tears.
‘It just made me feel so sad as it’s just another reminder of another obstacle we have to tackle.
‘Do any other SMA mummies feel this way?’
Earlier this month, Jesy Nelson shared details about a medical diagnosis she received as a baby and explained why she left the group Little Mix in 2020 in her documentary, ‘Life After Little Mix’.
The actor is currently advocating for the National Health Service to include a test for Spinal Muscular Atrophy Type 1 (SMA1) in routine newborn screenings. They recently gained over 120,000 signatures on a petition urging the government to fund and expedite this process.
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.
I’m absolutely gutted, but I completely understand. Jesy’s been such a warrior fighting to get this condition screened for in newborns – it’s amazing, honestly – and of course, prioritizing her daughters’ health is everything. She’s put her music on hold to focus on all of this, and while I’m devastated as a fan, I know she’s doing what’s most important. It just shows what an incredible mom and advocate she is. I’ll be here waiting for her when she’s ready, but right now, I’m just sending all my love and support.
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 completely focused on my children right now and simply don’t have the bandwidth for anything else. They are my priority, and I’m dedicated to fighting for a change in 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 her ex, Zion, didn’t anticipate the challenges of raising their children, and covering their medical expenses is a constant worry.
She described the daily medical treatments her children need as deeply painful, explaining that their cries and screams make her feel like she’s the one causing them harm.
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 cry and scream. It feels like I’m causing them distress, and I wish I could just be their comforting mom instead.
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 really difficult, while on others, even though I don’t forget about the diagnosis, things feel a little easier and less overwhelming.
Lots of mothers have warned me it’s going to be unpredictable, so I’m trying to focus on getting through each day as it comes. It won’t be a smooth ride – I expect lots of ups and downs.
She also spoke about the heartbreaking news that Ocean and Story might not live past their second birthdays.
Jesy Nelson recently told Jamie Laing on his podcast, Great Company, that she’s optimistic her children will overcome their health 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 don’t usually survive past the age of two.
This isn’t ideal, but I’m learning to accept things as they are and focus on making the best of it. My daughters are incredibly strong and I truly believe they’ll overcome any challenges they face.
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2026-02-22 17:21