Jesy Nelson shared a sweet clip of her daughter saying ‘mama’ for the first time and said her ‘life is complete’ – amid their SMA battle.
Little Mix star 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 focused on caring for her little ones.
Since her twins were diagnosed, Jesy has been campaigning for the NHS to introduce newborn testing on babies for SMA1. A late diagnosis meant her twins are unable to ever walk.
In her new post, she captured Story lying down under a blanket while surrounded by cushion toys.
As the tot wanders her eyes around the room, she can be heard saying the word ‘mama,’.
Alongside the post, Jesy penned: ‘Story said Muma for the first time my life is complete.’
Jesy Nelson shared a sweet clip of her daughter saying ‘mama’ for the first time and said her ‘life is complete’ – amid their SMA battle
In her new post, she captured twin Story lying down under a blanket while surrounded by cushion toys
Former Little Mix 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 Wes Streeting 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 doing it in certain areas of England, 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.
Her outing comes after Jesy offered a £10,000 reward after revealing her car full of hospital equipment was stolen from her driveway.
In a post on Instagram, Jesy told her followers that her Black Defender had been stolen, along with vital equipment she needed to care for her girls.
She wrote: ‘My car got stolen off the driveway in the early hours of this morning, if anyone sees a black defender, reg plate JJ73SSY, please if any of you have seen or know any information, DM me or contact the police. I have so much of my girls’ hospital equipment in there that’s really needed.’
The star went on to share that the car was stolen in Brentwood, Essex, with it last tracked by a camera in the Chelmsford area, and has offered a £10,000 reward for anyone that finds the vehicle.
