Jesy Nelson posts new photos of baby daughters Ocean and Story with feeding tubes after sharing the heartbreaking reality of their daily life following devastating diagnosis

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As a lifestyle expert, I’m sending so much love to Jesy Nelson right now. She’s bravely shared some incredibly touching photos of her twin daughters, Ocean and Story. It’s heartbreaking to learn they’ve been diagnosed with Spinal Muscular Atrophy Type 1, and the photos show them with feeding tubes. It takes immense strength to share something so personal, and I commend her for raising awareness and showing the reality of life with this condition.

The 34-year-old singer posted a video to her Instagram Stories on Monday showing her nine-month-old twins being pushed in strollers. She shares the children with her ex-partner, Zion Foster.

Spinal Muscular Atrophy type 1 (SMA1) is a genetic condition that causes increasing muscle weakness and loss of muscle mass. This happens because the nerves controlling muscles deteriorate, and affected individuals typically need feeding tubes to help with serious problems swallowing, sucking, and breathing.

Ocean and Story were bundled up against the cold, both wearing adorable pink hats and cozy brown teddy bear coats, all wrapped in a knitted blanket.

Jesy captioned the snaps ‘Ocean bear’ and ‘Story bear’. 

The singer, previously with Little Mix, posted glamorous photos of herself enjoying time with friends, following her recent post about the challenges her daughters face every day.

Jesy Nelson shared with the Daily Mail that the daily medical treatments her children need are the most difficult part of being a parent. She finds it heartbreaking to see them in pain and hear them cry during these procedures, feeling helpless and as though she’s causing them harm.

She said raising twins was a very emotional experience, with some weeks being incredibly difficult and others a little easier.

The singer is advocating for babies to be tested for Spinal Muscular Atrophy (SMA) as part of their routine newborn screening. They believe that finding the condition early on could significantly improve a child’s health and development.

Jesy and her ex, Zion, didn’t anticipate the challenges of raising their children with significant medical needs. She says it’s a constant effort to provide the care they require, and all she really wants is to be a mom to them.

Jesy explained to the Daily Mail that it’s impossible to truly understand how demanding her daily life is unless you experience it firsthand, even though she can try to describe it.

To be honest, I’m still finding it really difficult to manage some necessary medical tasks. It’s something I never anticipated having to deal with, and it’s been challenging.

It’s hard because they’re so small, and even though I know what I’m doing is ultimately good for them, it’s painful when they cry and scream. It feels like I’m causing them harm, and I wish I could just be their comforting mom in those moments.

Oh my gosh, when someone asked Jesy what a normal day with her little girls is like, she just laughed! She said it’s totally impossible to explain because every single day is different – not in terms of what they do, but how everyone feels. It’s just… constantly changing, you know? It’s so sweet and real, and honestly, it makes me love her even more!

It’s hard to describe what each day is like. Some days are really difficult, while on others, though I never forget what’s happening, things feel a little easier and less overwhelming.

Honestly, so many moms have warned me – they’ve been through this and said this is exactly how it’s going to feel. That’s why I’m trying to just focus on getting through each day, one at a time. It’s the only way I can cope, you know?

‘It’s a rollercoaster, I don’t feel like this is going to be a steady journey at all.

She also spoke about the heartbreaking news that Ocean Jade 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 her children will overcome their health challenges thanks to the treatment they’re receiving, and hopes they’ll live long and fulfilling lives.

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 sadly, these children typically don’t survive past the age of two.

This isn’t ideal, but I’m accepting it and focusing on making the best of things. My daughters are incredibly strong and I truly believe they’ll overcome any challenge they face.

Jesy Nelson, who used to be in the band Little Mix, is calling on the NHS to broaden its newborn screening process to include a test for spinal muscular atrophy. She wants the standard heel prick test for babies to check for this condition.

Tests cost around £1 each and the twins ‘could have saved their legs’ with early treatment. 

Jesy’s twin babies developed a condition called twin-to-twin transfusion syndrome while still in the womb, and they were born early, at 31 weeks.

As a lifestyle expert who’s followed this story, I’ve learned the twins were diagnosed with Twin-to-Twin Transfusion Syndrome, or TTTS. It’s thankfully rare in identical twins, but it happens when they share a single placenta. Basically, it creates an imbalance where one baby receives too many nutrients and the other doesn’t get enough, and it’s really tough on both of them.

It doesn’t matter the specific cause, an imbalance of nutrients is harmful, even for babies. Without treatment, the outcome is often fatal – around 95% of affected infants don’t survive.

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2026-02-09 18:49