Jesy Nelson has spoken publicly about the moment she realised something was seriously wrong with her twin babies, after months of reassurance that their symptoms were 'normal'.
The singer says the experience has left her determined to raise awareness about Spinal Muscular Atrophy type 1, a rare genetic condition where early diagnosis can mean the difference between life and death.
The 34-year-old year old, best known for her time in Little Mix, revealed that her daughters, Ocean Jade and Story Monroe Nelson-Foster, were diagnosed with SMA type 1 after what she described as four months of gruelling hospital appointments.
The twins were born prematurely in May, and Nelson said their early development was repeatedly attributed to that fact.
Jesy Nelson on Being Told Not to Worry
In an emotional video shared on Instagram, Jesy Nelson said she and her fiancé Zion Foster were initially reassured by doctors when concerns were raised.
She explained that her mother first noticed the twins were not moving their legs as much as expected.
Later, the babies began struggling with feeding. However, because they were born early, Nelson said she was told their development would likely be delayed and that there was no immediate cause for alarm.
Nelson said the reassurance, while well-intentioned, ultimately delayed the diagnosis of a condition where time is critical.
The Early Warning Signs She Wants Parents to Know
Nelson said she decided to speak out so other parents might recognise the signs sooner. She described symptoms including floppiness, an inability to hold the body up without support, limited movement in the legs that can appear 'frog-like', and rapid breathing focused in the stomach rather than the chest.
She urged parents not to ignore these signals, even if reassured, stressing that instinct and persistence matter when something does not feel right.
What SMA Type 1 Is and Why Timing Matters
SMA type 1 is the most severe and common form of spinal muscular atrophy. It affects motor neurons, leading to progressive muscle weakness, loss of movement and paralysis.
According to NHS data, around 70 babies are born with SMA each year in the UK. Without treatment, fewer than one in ten children with SMA type 1 survive beyond the age of two.
Medical experts agree that early treatment, ideally before symptoms become severe, can dramatically improve outcomes.
Treatment Options Now Available
Nelson confirmed that both of her daughters have now received treatment. She said she is grateful access was available, noting that without it the condition is fatal.
Since 2019, three disease modifying treatments for SMA have been rolled out on the NHS, including gene therapy. Evidence shows that babies treated before symptoms fully develop can, in some cases, follow near normal developmental pathways.
Screening Gaps Under Scrutiny
The charity SMA UK has long argued that early detection is critical. It has criticised the fact that SMA is not included in the NHS newborn blood spot screening test, which is carried out when babies are five days old and currently screens for nine rare but serious conditions.
In September last year, NHS Scotland added SMA to its newborn screening programme as part of a two-year pilot. Health officials said babies treated before symptoms could, in many cases, avoid severe disability.
Why Nelson Says She Is Speaking Out Now
Nelson described the past few months as the most heartbreaking time of her life. She said she felt she was grieving the future she imagined for her children, while also feeling grateful they are alive and receiving care.
By sharing her experience, Nelson said she hopes something positive can come from it. Her message to parents is clear: if warning signs appear, push for answers, because with SMA type 1, time is of the essence.
