- Jesy Nelson announced her twin daughters were diagnosed with SMA type 1.
- Born prematurely at 31 weeks, the girls have received treatment at Great Ormond Street Hospital.
- Doctors warned the condition may prevent walking and affect breathing and swallowing.
- The family and charities call for faster newborn screening and access to therapies like Zolgensma.
Former Little Mix star shares heartbreaking diagnosis
Former Little Mix singer Jesy Nelson has revealed that her twin daughters, Ocean Jade and Story Monroe Nelson-Foster, have been diagnosed with spinal muscular atrophy type 1 (sma type 1). Nelson said she shared the update in an Instagram video to raise awareness and help other families get a fast diagnosis.
Early struggles and hospital care
The twins were born prematurely in May last year at 31 weeks. Nelson told viewers the girls had reduced leg movement and feeding difficulties, prompting a series of tests and appointments. Specialists at Great Ormond Street Hospital in London confirmed the diagnosis.
Nelson said doctors warned the condition is likely to prevent the girls from walking and may stop them regaining neck strength. She described how sma type 1 affects muscles across the body, including those used for breathing and swallowing, and said she has had to help with breathing machines and intensive care tasks at home.
Treatment and prognosis
Nelson confirmed the twins have received treatment. She expressed gratitude for the medical care, noting that without timely therapy the condition can be fatal within two years.
One treatment highlighted in coverage of sma type 1 is Zolgensma, a gene therapy approved by the NHS in 2021 that delivers a healthy copy of the faulty gene. Experts stress timing is critical: irreversible nerve damage can occur early, so prompt diagnosis and intervention matter.
Advocacy for newborn screening
Charities including SMA UK are campaigning to add spinal muscular atrophy to the newborn blood spot screening program in the UK. Currently, screening is only carried out if there is a known affected sibling. SMA UK estimates around 47 babies were born with the condition in the UK in 2024 and says about one in 40 people carry the altered gene.
Why Nelson went public
In her video, Nelson said she wanted to speed up diagnoses for other children and help families access treatment quickly. She also expressed hope that her daughters will “defy all the odds” with the right care and support.
Watch: Jesy Nelson’s Instagram message
Jesy shared the update in an Instagram video. Viewers can find the post on her official Instagram profile: Jesy Nelson on Instagram.
As the family navigates treatment and care, doctors and charities continue to press for faster newborn screening and access to life-changing therapies for babies born with sma type 1.
Image Referance: https://www.bbc.com/news/articles/cql4rwee5p3o