Jesy Nelson shared photos on Instagram on Monday showing her nine-month-old twin daughters, Ocean and Story, after they were fitted with leg splints at Great Ormond Street Hospital. The twins were diagnosed with Spinal Muscular Atrophy in January, a condition that causes progressive muscle weakness and wasting. Ocean and Story require feeding tubes due to severe swallowing, sucking, and breathing difficulties, and Nelson has said a late diagnosis meant they are unable to ever walk. According to www.bbc.com, Jesy Nelson described feeling a duty to raise awareness about the condition.
Spinal Muscular Atrophy is a genetic neuromuscular condition that weakens muscles by affecting motor nerve cells in the spinal cord. SMA Type 1 is the most severe form, with a life expectancy of less than two years without treatment. According to the NHS, SMA affects sitting up, crawling, walking, breathing, and swallowing. SMA occurs in an estimated one in 10,000 births, with SMA type 1 accounting for around 60% of cases.
I just hope people continue to watch the next part of the journey. When the girls got their diagnosis, we decided that we wanted to continue filming.
The diagnosis has brought daily challenges and taken an emotional toll on the family. Ocean and Story need specially designed chairs to give them extra postural support. Jesy Nelson revealed that she burst into tears when she saw the girls' special feeding chairs. She broke down in tears at the weekend amid her twins' devastating health battle, and has said the girls would probably never walk due to their late diagnosis.
Jesy Nelson has been campaigning for SMA1 screening at birth through the standard heel prick test. She has said that, had her twins had the test—which costs around £1—and been diagnosed and started treatment earlier, their legs could have been saved. According to SMA UK, drug treatment for SMA delivers a healthy copy of the affected gene, but timing is critical due to potential irreversible nerve damage. SMA UK also wants SMA screening added to the newborn blood screening test.
As hard as it was, we were like, 'You know what? There's a reason you guys are here, and we've got to make the best out of this situation'.
Recent campaign developments include a petition that has reached over 100,000 signatures, calling for the government to fund and fast-track SMA screening, meaning Parliament must consider it for debate. Jesy Nelson burst into tears after her petition passed this threshold. She also met Health Secretary Wes Streeting to discuss the impact of early detection for SMA, telling fans that only certain areas in England will be carrying out SMA tests on newborns.
The government has announced plans for expanded screening. Wes Streeting announced plans for more than 400,000 babies to be screened for SMA from October 2026. However, the specific areas in England that will have SMA screening from that date, and what criteria determine their selection, have not been detailed. The current status and timeline for the parliamentary debate on the SMA screening petition also remain unclear.
Ocean's face she's like 'I see what you doing to my sister'.
Scotland has taken a pioneering role in newborn SMA testing. Jesy Nelson visited a Scottish laboratory that has become the first to test for SMA in newborns as part of a two-year pilot scheme. All babies born in Scotland will now be tested for SMA as part of this scheme, making Scotland the first part of the UK to introduce newborn SMA testing.
Current screening limitations highlight the urgency of treatment. Screening for SMA is currently only done for those with a sibling who has the condition. The newborn blood screening test checks for 10 serious but rare health conditions at five days old. SMA UK emphasizes that every month another four babies are diagnosed with SMA and the clock is always ticking for effective treatment.
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.
Jesy Nelson is balancing motherhood, career, and advocacy. She welcomed her daughters prematurely in May 2025 with her ex-fiancé, Zion Foster, and celebrated her first Mother's Day on Sunday. She has decided to keep filming her Prime Video series despite her daughters' diagnosis. She has parked her music career to focus on her daughters and advocacy work.
Nelson frequently shares public updates about her family's journey. She recently candidly opened up on her babies' diagnosis in her documentary Life After Little Mix and often shares updates about her twins' health battle on Instagram. She posted a heartwarming video of one of her daughters giggling with her mother, Janice, on Thursday, and shared clips showing her daughter's mullet hairstyle and comparing her other twin to a Cabbage Patch doll.
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.
Campaign visibility has been boosted through collaborations with other families. Jesy Nelson shared snaps from a recent campaign shoot with families and their children with various health difficulties and disabilities.
Expanded screening could significantly change outcomes for future SMA cases. Early detection through newborn testing allows for timely intervention with available treatments, potentially preventing severe disability.
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.
Reactions to the campaign have highlighted broader systemic issues. The official NHS or government response to Jesy Nelson's campaign and the petition reaching 100,000 signatures has not been fully detailed. Nelson's advocacy has drawn attention to inequalities in healthcare access, with her criticism of the postcode lottery for SMA testing resonating with many families.
Implementation details for England's planned screening rollout remain uncertain. Beyond the October 2026 target for screening over 400,000 babies, the specific mechanisms for expanding the program nationwide are not yet public. What specific treatments the twins are currently receiving at Great Ormond Street Hospital, and how their health is progressing with their current treatment, have not been disclosed. Their prognosis given the advanced stage of their condition at diagnosis also remains unclear.
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.
Happy Mother's Day to all the super human amazing mummas out there. For anyone who finds today difficult, my heart goes out you. I had the chance to sit down with some incredible mums and families to celebrate women and the true powerhouses they are.
It was so incredibly special hearing their stories and learning about their amazing children who have had to overcome so much in their life. I cannot wait to share with you all their inspiring stories.
So the girls need special feeding chairs that came yesterday and I couldn't help but burst into tears yesterday when I saw them. It just made me feel so sad as it's just another reminder of another obstacle we have to tackle. Do any other SMA mummies feel this way?
It means a lot to me and the SMA community.
They would 'probably never walk'.
I felt selfish to keep the diagnosis to myself and had a duty to raise awareness.