Jesy Nelson shared photos of her twins on Instagram on Monday following their fitting with leg splints at Great Ormond Street Hospital, according to multiple reports. Her twin daughters Ocean and Story were diagnosed with Spinal Muscular Atrophy (SMA) in January. Nelson has been campaigning for the NHS to introduce newborn testing for SMA1, saying a late diagnosis meant her twins are unable to ever walk.
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. SMA1 causes progressive muscle weakness and wasting, requiring feeding tubes and special chairs for Ocean and Story. The condition affects sitting up, crawling, walking, and can cause breathing or swallowing problems.
Only certain areas in England will carry out SMA tests on newborns, calling it a 'postcode lottery'.
Jesy Nelson welcomed her twin daughters prematurely in May 2025 with her ex-fiancé, Zion Foster. According to multiple reports, Nelson's twins are nine months old. According to research sources, Jesy Nelson shared a heartwarming video of one of her daughters giggling with her mother, Janice, on Thursday. She also revealed she broke down in tears at the weekend amid her twins' devastating health battle.
The specific treatments Ocean and Story are currently receiving for SMA Type 1 have not been disclosed, and their exact medical prognoses remain uncertain given their diagnosis and treatment.
Another reminder of another obstacle.
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, according to multiple reports. All babies born in Scotland will now be tested for SMA as part of that two-year pilot scheme. Scotland is the first part of the UK to introduce newborn SMA testing.
According to multiple reports, Wes Streeting announced plans for more than 400,000 babies to be screened for SMA from October 2026. Jesy Nelson met Health Secretary Wes Streeting to discuss early detection of SMA, according to research sources.
If her twins had been tested for SMA at birth (costing around £1) and treated earlier, their legs could have been saved.
The exact timeline and criteria for the planned SMA testing rollout in England beyond October 2026 are unclear, as are how many areas in England will initially implement SMA newborn testing and which ones.
According to research sources, SMA screening is currently only carried out for those with a sibling who has the condition. The newborn blood screening test (heel prick test) checks for 10 serious but rare health conditions.
Her daughters would 'probably never walk' due to SMA.
A petition for SMA newborn screening reached 100,000 signatures and will be debated in Parliament.
The current status of the parliamentary debate on the SMA screening petition has not been detailed.
Selfish to keep this to myself and not potentially save a child's life and had a 'duty of care' to raise awareness.
According to research sources, Jesy Nelson opened up about her babies' diagnosis in her documentary Life After Little Mix and shares updates on Instagram. According to multiple reports, Jesy Nelson celebrated her first Mother's Day on Sunday, sharing snaps from a campaign shoot with families of children with health difficulties. According to research sources, Jesy Nelson posted clips on Instagram showing her daughter's mullet hairstyle and comparing her other twin to a Cabbage Patch doll. According to research sources, Jesy Nelson described feeling selfish to keep this to herself and not potentially save a child's life and had a 'duty of care' to raise awareness.
According to research sources, Jesy Nelson has parked her music career to focus on her daughters and advocacy. According to multiple reports, Jesy Nelson is continuing to film her Prime Video series despite the twins' diagnosis, hoping to 'make a change'.
SMA occurs in an estimated one in 10,000 births, with SMA type 1 accounting for around 60% of cases, according to research sources. According to research sources, Jesy Nelson described that only certain areas in England will carry out SMA tests on newborns, calling it a 'postcode lottery'. According to research sources, Jesy Nelson described it as another reminder of another obstacle. According to research sources, Jesy Nelson described that if her twins had been tested for SMA at birth and treated earlier, their legs could have been saved. According to research sources, Jesy Nelson described her daughters would 'probably never walk' due to SMA.