Jesy Nelson Shares Her Journey as a Mum to Twins with SMA Type 1
Jesy Nelson, the former singer of Little Mix, recently shared a heartwarming glimpse into her life as a mother on Instagram. The 34-year-old was seen taking a peaceful walk through the forest with her twins, Ocean and Story, who are now 10 months old. In the photos, the babies were wrapped in their blankets, looking around in awe at the natural surroundings. Alongside the post, she wrote: ‘Forest walks with my girlies’ alongside a smiley love heart emoji.
The singer revealed in January that her twins had been diagnosed with SMA Type 1, a rare muscle-wasting condition. Since then, Jesy has dedicated herself to caring for her children, while also campaigning for changes in the NHS to improve early detection of the condition.
Campaigning for Newborn Testing for SMA
Jesy has been advocating for the NHS to introduce newborn testing for SMA Type 1, as 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, there is now hope for change.
Last week, Wes Streeting announced plans for more than 400,000 babies to be screened for SMA from October 2026. However, Jesy explained that the rollout will only cover certain areas in England, making it a postcode lottery for families. She said: ‘It is a bit bittersweet because basically they are only doing it in certain areas of England… 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.’
Despite this, Jesy remains hopeful. She mentioned that the petition signed by over 100,000 people is now going to be debated in parliament, which she called ‘amazing.’ She thanked her fans for their support, saying: ‘That is all down to you guys so thank you so so much, you’re incredible.’
A Major Milestone for SMA Awareness
At the start of a recent video, Jesy celebrated a major milestone, expressing pride in 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.’
The pilot program will see an estimated 400,000 babies tested in England. Currently, the NHS 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 Jesy 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 area. I am pleased to confirm that [screening] will now start in October this year rather than January 2027 as previously planned.’
Emotional Struggles and Hope for the Future
Jesy has spoken openly about the emotional toll of caring for her twins. She described the medical procedures her babies must endure each day as heartbreaking, leaving her feeling like she’s hurting them as they cry and scream. She admitted that some days are ‘really fing s‘ while others are slightly lighter.
She and her ex-partner, Zion, never expected to be in this situation, and Jesy says providing for their medical needs is a daily struggle. She said: ‘Every day is so full-on – I can speak about it, but I’ll never be able to explain how intense it is until you see it.’
On the Great Company podcast, Jesy expressed hope that her babies will defy the odds now that they are receiving treatment. She explained: ‘So spinal muscular atrophy is a muscular wasting disease, so they don’t have a gene that we all have in our body. Their muscles are now deteriorating and wasting away… If you don’t get them treatment in time, eventually the muscles will all just die, which then affects the breathing, the swallowing, everything. And they will die before the age of two.’
Despite the challenges, Jesy remains determined. She believes her daughters are the strongest and most resilient babies and is hopeful they will go on to have a longer life expectancy. ‘It’s not okay, but it is what it is, and I just have to accept it, and now just try and make the best out of this situation,’ she said.
