Former Little Mix singer Jesy Nelson said her twin babies have been diagnosed with spinal muscular atrophy type one.
A rare and severe genetic condition that doctors say may prevent them from ever walking, highlighting renewed concerns over delayed diagnosis and newborn screening gaps in the UK.
KEY POINTS
- Former Little Mix singer Jesy Nelson revealed her twins have SMA1, the most severe form of spinal muscular atrophy.
- SMA1 is rare but life threatening without early treatment, affecting about seventy babies each year in the UK.
- The case has drawn attention to the absence of SMA from routine NHS newborn screening in most of the UK.
Jesy Nelson, thirty four, shared the diagnosis in an emotional video posted to Instagram on Sunday.
Saying her daughters Ocean Jade and Story Monroe Nelson Foster were unlikely to regain full muscle control despite receiving treatment.
The former Little Mix singer said the twins were born prematurely in May and diagnosed after months of intensive hospital assessments.
Nelson said doctors told the family the babies may never walk or hold their heads independently because of spinal muscular atrophy type one, commonly known as SMA1.
The condition causes rapid muscle weakness and affects the nerves controlling voluntary movement.
The twins were born at thirty one weeks following a complicated pregnancy marked by twin to twin transfusion syndrome, a condition that affects identical twins who share a placenta.
Nelson underwent emergency treatment and spent ten weeks in hospital before giving birth prematurely.
According to Nelson, concerns about the babies’ development initially went unaddressed because premature infants often reach milestones later than full term babies.
The diagnosis came after her mother noticed reduced leg movement and the twins later developed feeding difficulties.
SMA1 is caused by a mutation in the SMN1 gene, leading to the loss of motor neurons in the spinal cord. Without treatment, the condition is typically fatal in early childhood.
Advances in gene therapy and disease modifying drugs since twenty nineteen have significantly improved survival rates when treatment is started early.
Neuromuscular specialists say Nelson’s case underscores the critical role of early diagnosis.
Dr. Matthew Davis, a consultant pediatric neurologist at Great Ormond Street Hospital, said delayed detection remains a major challenge.
“SMA1 progresses very quickly in the first months of life,” Davis said.
“Treatment is most effective before symptoms appear or when they are very mild. Once motor neurons are lost, they cannot be restored.”
Public health experts note that the UK does not currently include SMA in its routine newborn blood spot screening, except in Scotland where a pilot program began in twenty twenty four.
By contrast, several European countries and parts of the United States have already adopted universal screening.
The absence of routine screening means diagnosis often depends on parental observation and clinical referral, which can delay treatment during a critical window.
Nelson said the past months had been “the most heartbreaking time” of her life but stressed the importance of awareness.
She urged parents to seek medical advice if they notice warning signs such as floppiness, weak head control or unusual breathing patterns.
SMA UK, a national charity supporting affected families, said Nelson’s disclosure reflects a broader systemic issue.
“Early detection of SMA can be life changing,” said chief executive Emma Buckingham. “Families should not have to rely on chance observation to access treatment.”
An NHS spokesperson said the government’s screening programs are “kept under continuous review” and decisions are based on clinical evidence, cost effectiveness and treatment availability.
Health officials are expected to review data from Scotland’s newborn screening pilot before making any decision on expanding SMA screening across the UK.
Specialists say broader screening could reduce long term care costs and improve quality of life for affected children.
For families already diagnosed, ongoing care typically involves respiratory support, physiotherapy and nutritional management alongside medication.
Long term outcomes vary widely depending on how early treatment begins.
Jesy Nelson’s public disclosure has drawn global attention to spinal muscular atrophy type one and the realities faced by families navigating rare genetic diseases.
While medical advances have transformed survival prospects, experts say systemic gaps in early detection continue to shape outcomes for many children worldwide.
Author’s Perspective Adnan Rasheed
In my analysis, this story is not just about a public figure but about how easily rare conditions can be missed when early signs are explained away.
I believe it highlights the quiet emotional toll on families who sense something is wrong long before systems respond.
I predict that early genetic screening for SMA will become standard in the UK after data proves that early treatment saves both lives and long term healthcare costs.
If a baby feels unusually floppy or struggles to feed, trust your instinct and ask directly about genetic testing.
NOTE! This report was compiled from multiple reliable sources, including official statements, press releases, and verified media coverage.
