Jesy Nelson appeared at 10 Downing Street on Monday as she continued in her fight to have Spinal Muscular Atrophy (SMA) checked for at birth.
The singer, 34, revealed in January her now nine-month-old twins, Ocean and Story, had been diagnosed with SMA 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, having said that a late diagnosis meant her twins are unable to ever walk.
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……
Jesy Nelson appeared at 10 Downing Street on Monday as she continued in her fight to have Spinal Muscular Atrophy (SMA) checked for at birth
The singer, 34, revealed in January her now nine-month-old twins, Ocean and Story, had been diagnosed with SMA Type 1, a rare muscle-wasting condition, and she has since been focused on caring for her little ones
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 looked like she meant business in a chic Ann Andelman two-piece, comprising a strapless top and smart wide-leg trousers.
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.
She gives regular updates on her daughters’ journeys
‘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.
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 alongside former TOWIE star Chris ‘Little Chris’ Drake
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.
Jesy looked like she meant business in a chic Ann Andelman two-piece, comprising a strapless top and smart wide-leg trousers
The NHS currently carries out ‘heel prick’ tests on babies at around five-days-old to check for just 10 treatable conditions, including cystic fibrosis.
In a letter addressed to the singer and Giles Lomax, chief executive of SMA UK, Streeting said: ‘At our meeting I committed to seeing whether the in-service evaluation of SMA screening could be implemented faster and cover a wider geographical areas.
‘I am pleased to confirm that [screening] will now start in October this year rather than January 2025 as previously planned.’
Earlier this year, she met with Health Secretary Wes Streeting to discuss the plan
