Jesy Nelson shares adorable clip of her twin daughters holding hands and says they are her ‘whole heart and soul’ – amid their SMA battle

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Jesy Nelson posted a sweet video of her twin daughters holding hands on Sunday, calling them ‘her whole heart and soul.’ This comes as her daughters continue to bravely fight Spinal Muscular Atrophy (SMA).

Jesy shared in January that her twins, Ocean and Story, who are now nine months old, have been diagnosed with Spinal Muscular Atrophy (SMA) Type 1, a rare condition that causes muscle weakness. Since then, she’s been dedicated to caring for them.

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

She recently shared a photo of the two cuddling, writing, ‘After they finish eating, they always fall asleep, but they need to be holding hands to do so.’

She posted another photo to Instagram, this time of them wearing matching yellow outfits, and captioned it simply: ‘My whole heart and soul.’

As a lifestyle expert, I’ve been following Jesy Nelson’s journey with her twins, and she’s been so open about their challenges with Spinal Muscular Atrophy (SMA). She’s kept her fans updated over the last few months, and it’s been really inspiring to see her share their story.

I still can’t believe it! For ages, people have been begging the UK to start testing newborns for this awful muscle disease, but the official committee just kept saying no. Then, last month, Wes Streeting announced they’re finally going to do it! From October 2026, over 400,000 babies will be screened – it’s incredible! I’ve been following this for so long, and it feels like a huge win for everyone affected.

Jesy met with a politician and continued her advocacy work with a visit to the Prime Minister’s home, where she took selfies and shared a heartfelt message: ‘When life throws you lemons…’

I’ve been so inspired by Jesy’s journey and how openly she’s talked about her work. However, she recently shared that there’s still a lot to do. It’s frustrating to learn that these important newborn tests won’t be available everywhere in England just yet, and it feels like progress is happening slowly.

She explained that the new testing program isn’t available everywhere, which is disappointing. Currently, it’s limited to specific areas of England, meaning babies outside those locations won’t be screened for Spinal Muscular Atrophy (SMA).

Honestly, it breaks my heart to think about it, but where you live basically decides how good the care your baby gets is – and that’s just wrong. Every single little one deserves the best start, and while things are getting better, we’ve still got such a long way to go. It’s just… it’s not fair, you know? I just want every baby to have the same amazing opportunities.

I’m continuing to work hard to expand this across England. Plus, the petition we all signed has reached over 100,000 signatures, which means it will now be discussed in Parliament – that’s fantastic news!

I truly appreciate all of your support and kindness. Thank you so much – you’re all amazing!

Jesy began 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 news I’ve heard 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 tested at birth because screening for it wasn’t available in England at the time.

They’ve announced that starting in October, all newborns in England will be tested for Spinal Muscular Atrophy (SMA), which is fantastic news.

Oh my gosh, this is HUGE for everyone who cares about Spinal Muscular Atrophy! People have been fighting for this for YEARS, just tirelessly working to make it happen. Honestly, seeing it finally pass? It just fills me with so much pride, it’s incredible!

After her daughters’ experiences, the singer has passionately advocated for the NHS to offer wider screening for spinal muscular atrophy.

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

This appearance follows Jesy Nelson’s announcement of a £10,000 reward for the return of hospital equipment stolen from her car, which was taken from her driveway.

My car, a black Defender with the license plate JJ73SSY, was stolen from my driveway early this morning. It contains essential hospital equipment for my daughters, so I’m really worried. If anyone sees it or has any information, please message me or contact the police.

The celebrity revealed their car was stolen in Brentwood, Essex. It was last seen on camera near Chelmsford, and they’re offering a £10,000 reward for its safe return.

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

In a letter to the singer and Giles Lomax, the head of SMA UK, Streeting stated that he promised to explore ways to speed up and expand the testing of newborns for Spinal Muscular Atrophy (SMA) after their meeting.

We’re happy to announce that screening will begin in October of this year, earlier than the previously scheduled start date of January 2025.

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2026-04-26 14:19