Jesy Nelson says there’s ‘nothing better than coming home’ to her twin daughters as she shares sweet clip of her babies after sharing they’re set to undergo more tests amid SMA battle

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Jesy Nelson posted a sweet video of her twin daughters on Friday, updating fans that they will have further tests as they continue to cope with spinal muscular atrophy.

The 34-year-old singer shared in January that her twins, Ocean and Story, now nine months old, have been diagnosed with Spinal Muscular Atrophy (SMA) Type 1, a rare condition that weakens muscles. Since then, she’s been dedicated to caring for them.

Jesy posted a sweet video of one of her children happily giggling while being held, even though they had a feeding tube in their nose.

She captioned the post: ‘There’s nothing better than coming home to this.’

Jesy shared an adorable photo on Instagram on Thursday showing her twin baby girls getting checked by a doctor in the hospital.

The twin babies were dressed in sweet matching yellow and pink outfits, and both had feeding tubes gently placed in their noses.

In the photo, Ocean looked intently at Story while she was being checked on. Jesy captioned it, ‘Ocean’s face says it all – she knows what you’re doing to my sister!’

After her twins received a diagnosis of Spinal Muscular Atrophy type 1 (SMA1), Jesy began advocating for the NHS to include newborn screening for the condition. She explained that because her twins weren’t diagnosed early enough, they will never be able to walk.

Even though the UK’s National Screening Committee decided against adding a new muscle disease to the list of conditions screened for in January, Wes Streeting recently announced that screening for it will begin for over 400,000 babies starting in October 2026.

Jesy explained to her fans that these newborn tests won’t be available everywhere in England just yet, and there’s still more work to be done to expand access.

She explained that the program is only available in specific areas of England, meaning babies outside those locations won’t be tested for Spinal Muscular Atrophy, which she finds upsetting.

Where a baby is born often unfairly impacts their chances in life, and that’s not right. Every baby deserves the best start, and while progress is being made, there’s still a lot of work to do to ensure equal opportunities for all.

I’m continuing to work hard to expand this initiative throughout England. Plus, the petition we all signed has reached 100,000 signatures, meaning it will now be debated in Parliament – which is fantastic news!

I truly appreciate all of your support and kindness – thank you so much! You’re all incredible, and I couldn’t have done it without you.

Jesy kicked off the video by celebrating a significant achievement and expressing her pride in how much progress the campaign has made.

I wanted to share some information and updates I’ve learned recently.

I’ve been working to include Spinal Muscular Atrophy (SMA) in England’s newborn screening program. My daughters were diagnosed with SMA Type 1, and sadly, they weren’t screened at birth because the screening wasn’t available in England at the time.

Starting in October, all newborns in England will be tested for Spinal Muscular Atrophy (SMA), which is a fantastic development.

This is a huge step for the SMA community. People have been working for years to achieve this, and it’s a really proud moment for everyone involved.

Inspired by her daughters’ experiences, the singer has passionately advocated for the NHS to offer broader screening for spinal muscular atrophy.

The pilot will see an estimated 400,000 babies tested in England.

Newborn babies in the UK currently receive a simple heel prick test around five days after birth. This test screens for 10 conditions that can be treated if found early, such as cystic fibrosis.

In a letter to the singer and Giles Lomax, the CEO of SMA UK, Streeting explained that he promised to explore ways to speed up and expand the testing of SMA screening after their meeting.

We’re happy to announce that screening will begin this October, earlier than the previously scheduled date of January 2027.

Even though her nine-month-old daughters have been given a very serious diagnosis – doctors don’t expect them to live past age two – Jesy recently shared that she’s continuing to film her Prime Video show, determined to ‘make a difference’ and raise awareness.

During a recent interview, she expressed hope that viewers will keep following the story. She explained that after the girls received their diagnosis, they made the decision to continue filming.

Despite the difficulty, we realized there was a purpose to why everyone was there, and we needed to try and make the most of it.

Jesy Nelson recently shared with the Daily Mail that she finds it heartbreaking to watch her children go through daily medical treatments, as they often cry and scream during the procedures, making her feel like she’s causing them pain.

She said caring for the twins was incredibly emotionally challenging, with some days being extremely difficult and others a little easier.

Jesy and her former partner, Zion, didn’t anticipate the challenges of caring for their children, and Jesy admits that covering their medical expenses is a constant worry.

It’s hard to describe how demanding each day is – I can talk about it, but you really need to experience it yourself to understand how intense it truly is.

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 that they’ll likely live longer, healthier lives.

She explained that spinal muscular atrophy is a disease where the muscles weaken and waste away because people with the 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 beyond 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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2026-04-10 22:08