- Jesy Nelson has revealed her twin daughters were diagnosed with SMA type 1 after a series of health concerns.
- The girls were born prematurely at 31 weeks and assessed at Great Ormond Street Hospital.
- Nelson says treatment has begun; charities urge newborn screening for early intervention.
H2: Former Little Mix star shares difficult diagnosis
Jesy Nelson has revealed that her twin baby daughters, born last May, have been diagnosed with spinal muscular atrophy (SMA) type 1. In an Instagram video she posted, the singer said doctors told her the condition is severe and will “probably” prevent the girls from walking.
Nelson said the twins, Ocean Jade and Story Monroe Nelson-Foster, were born prematurely at 31 weeks. She described a period of “gruelling” months of appointments after noticing reduced movement in their legs and difficulties with feeding.
H3: What Nelson said in her Instagram video
In the Instagram video, Nelson explained that doctors at Great Ormond Street Hospital diagnosed the girls with SMA type 1 — a progressive genetic condition that attacks the nerves controlling muscles. She said it can affect breathing, swallowing and limb strength, and that without timely treatment the outlook can be life-threatening for babies.
Nelson said she has already helped manage aspects of their care at home, including using breathing support. She told viewers she wanted to share the diagnosis to encourage faster testing so other families can access treatment early.
H2: Treatment and the urgency of early diagnosis
SMA type 1 is the most severe form of spinal muscular atrophy. Gene therapies such as Zolgensma have transformed the outlook for many babies when given early, and the NHS approved Zolgensma for eligible infants in 2021. Health experts stress that timing is critical: irreversible nerve damage can occur quickly, limiting the benefit of treatment if diagnosis is delayed.
SMA UK, a leading charity, estimates dozens of babies are born with SMA in the UK each year and is campaigning for the condition to be included in routine newborn blood spot screening. Currently, screening is only carried out for families already known to be at risk.
H3: Family context and reaction
Nelson, 34, left the pop group Little Mix in 2020 and has released solo music since. She said the last three months have been the “most heartbreaking” of her life but added she believes her daughters will “defy the odds” with the right support.
H2: What families should know
- SMA type 1 can severely weaken muscles quickly; early specialist assessment is essential.
- Treatments are available that can change outcomes, but they work best when started as soon as possible.
- Parents concerned about newborn movement or feeding difficulties should seek prompt medical advice.
Nelson’s public account highlights both the emotional toll of a rare diagnosis and the growing push for faster newborn testing, which advocates say could allow more babies to receive potentially life-saving treatment earlier.
Image Referance: https://www.bbc.com/news/articles/cql4rwee5p3o
