Jesy Nelson's twin daughters, Ocean Jade and Story Monroe, were diagnosed with Spinal Muscular Atrophy (SMA) Type 1, a severe genetic neuromuscular disease that weakens muscles by affecting motor nerve cells in the spinal cord. The twins were born prematurely in May 2025. SMA Type 1 is the most severe form and can have a life expectancy of less than two years without treatment, according to medical experts.
The twins require feeding tubes in their noses due to severe swallowing, sucking and breathing difficulties caused by SMA1. They were fitted with leg splints at Great Ormond Street Hospital to support their limbs. Jesy Nelson burst into tears when she saw the girls' special feeding chairs, she said. The twins were back at Great Ormond Street Hospital for more tests on Thursday, according to multiple reports.
It's bittersweet because it could have made my girls' lives look so different.
Jesy Nelson decided to continue filming her Prime Video series after the diagnosis to 'make a change', she said. She celebrated her first Mother's Day on Sunday, sharing a video of her daughter giggling with her mother Janice. Jesy Nelson said she felt 'selfish to keep this to myself and not potentially save a child's life', explaining her decision to go public. She has parked her music career to care for her daughters, according to research reports.
Jesy Nelson is campaigning for the NHS to expand the standard heel prick test to check for SMA1. A petition for SMA screening reached over 100,000 signatures and will be debated in parliament. The petition was launched publicly on Thursday morning and hit 100,000 signatures on Friday night, according to research. Jesy Nelson broke down in tears after the petition reached 100,000 signatures, she said. She met Health Secretary Wes Streeting to speak about early detection.
This will be a huge impetus for other parts of the UK to speed up their own testing plans.
Wes Streeting announced plans for more than 400,000 babies to be screened for SMA from October 2026. Scotland will be the first part of the UK to introduce newborn screening for SMA, according to multiple reports. Jesy Nelson visited a Scottish laboratory that is the first to test for SMA as part of a two-year pilot scheme, she said. However, Jesy Nelson said the screening will only be in certain areas of England, calling it a 'postcode lottery'.
Jesy Nelson described the screening news as 'bittersweet' because it could have made her girls' lives 'look so different', she said. Giles Lomax, CEO of SMA UK, said the screening pilot in Scotland would be 'a huge impetus for other parts of the UK to speed up their own testing plans'.
I decided to continue filming my Prime Video series after the diagnosis to make a change.
SMA occurs in an estimated one in 10,000 births, according to the NHS. SMA type 1 accounts for around 60% of all SMA cases. The drug for SMA delivers a healthy copy of the affected gene, but timing is critical, according to SMA UK. Currently, screening for SMA is only carried out on those who have a sibling with the condition, according to research. The NHS newborn blood spot test currently checks for 10 serious but rare health conditions.
The exact timeline for the SMA screening rollout in England remains unclear, as does the specific treatment the twins are receiving and their current prognosis. The number of babies expected to be screened in the Scottish pilot has not been disclosed, and the cost of the SMA drug and its funding are unknown. It remains to be seen whether the petition debate in parliament will lead to a change in screening policy.
A late diagnosis meant my twins are unable to ever walk.
It's a postcode lottery.
I felt selfish to keep this to myself and not potentially save a child's life.