Jesy Nelsons Twins Bring Light Amid SMA Struggles

shared an adorable clip of her twin daughters holding hands on Sunday and said they are her 'whole heart and soul' - amid their SMA battle.

Jesy revealed in January her now nine-month-old twins, Ocean and Story, had been diagnosed with SMA (Spinal Muscular Atrophy) Type 1, a rare muscle-wasting condition, and she has since been

Since her twins were diagnosed, Jesy has been campaigning for the  to introduce newborn testing on babies for SMA1, having said that a late diagnosis meant her twins are unable to ever walk.

In her new post she captured them holding hands and penned: 'Right after their feed they always go to sleep but they have to hold each others hands to sleep.'

She also shared another clip to her Instagram grid in their matching yellow outfits as she wrote in the caption: 'My whole heart and soul.'

Former star Jesy, 34, has kept her followers informed of her twins' SMA journey over the past few months.

Despite the UK's National Screening Committee rejecting calls to introduce checks for another muscular disease in January, last month announced plans for more than 400,000 babies to be screened for the condition from October 2026.

Jesy has been liaising with the politician and marked another chapter in her fight for the cause with her visit to the Prime Minister's residence, where she snapped selfies and wrote the poignant caption: 'When life throws you lemons……

While she has proudly professed that her fight has come on leaps and bounds, earlier this month Jesy told fans there is a long way to go as only certain areas in England will be carrying out the tests on newborns.

'It is bit bittersweet because basically they are only , so if you do not live in that certain postcode or part of England then your baby won't be tested for SMA, which is really sad', she explained.

'It's essentially a postcode lottery for your baby which shouldn't be the case. All babies lives matter, so as amazing as it is there is still a long way to go in terms of that.

'I'm going to keep pushing and trying as much as possible to get this so it is in all areas of England and then also the petition you all kindly signed getting 100,000 signatures is now going to be debated in parliament which is just amazing.

'That is all down to you guys so thank you so so much, you're incredible and I am so appreciated of all the support and love, thank you so much.'

At the start of the video, Jesy celebrated the 'major milestone' and said she is 'really proud' how far the campaign has come.

She said: 'I just wanted to come on here to share some information and news that I have heard over the last couple of days.

'As you know I've been campaigning to try and get SMA as part of the newborn screening here in England. My girls were diagnosed with SMA Type 1 and unfortunately they weren't tested at birth because it wasn't here in England.

'They have now decided to roll that out in October for all babies in England to be tested at birth for SMA, which is absolutely incredible.

'I know it is a really big moment for the SMA community because this has been going on for years trying to get this passed, so yeah it is a real proud moment.'

The singer has campaigned tirelessly for the NHS to expand its screening to check for spinal muscular atrophy following her own experience with her daughters.

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