Doctors have applauded singer Jesy Nelson for publicly sharing her twins' diagnosis of a rare and severe muscle condition, saying her courage has cast a vital spotlight on a devastating disease that can affect newborn babies from birth.
A Heartbreaking Diagnosis for the Former Little Mix Star
The 34-year-old former Little Mix star and her fiancé, rapper Zion Foster, welcomed twins Ocean Jade and Story Monroe Nelson-Foster in May after a premature birth. In an emotional video posted on Instagram this Sunday, Nelson revealed the girls have been diagnosed with spinal muscular atrophy type 1 (SMA-1), a deadly neuromuscular disorder that affects approximately 70 babies in the UK each year.
Holding back tears, Nelson explained the prognosis they were given. "We were told that they're probably never going to be able to walk – and the best thing we can do right now is get them treatment and hope for the best," she said.
The diagnosis came after four months of what she described as "gruelling" hospital appointments. Nelson emphasised she wanted to warn other parents about the critical symptoms because 'time is of the essence' with this aggressive disease. "I just think that if I can raise as much awareness about this as possible – and the signs – then something good has to come out of this," she stated.
Understanding Spinal Muscular Atrophy (SMA)
Spinal muscular atrophy is a rare inherited condition that attacks the motor neurons – the nerve cells in the spinal cord that control muscle movement. It is caused by a fault in the SMN1 gene, which fails to produce a protein essential for keeping these neurons alive.
Without this protein, the neurons die, breaking the communication between brain and muscles, leading to progressive weakening and wasting. The condition is autosomal recessive, meaning a child must inherit a faulty gene copy from both parents. Around one in 40 people carries the altered gene, often unknowingly.
The NHS states that without treatment, fewer than 8 per cent of babies born with the most severe form will survive to age two. Charity SMA UK stresses that early detection is critical and notes the UK is "shockingly far behind" for not including SMA in the standard NHS newborn blood-spot screening test offered at five days old.
Spotting the Early Warning Signs of SMA-1
SMA-1 is the most common and severe form, with symptoms typically appearing within the first six months. Nelson said early signs in her twins included pronounced floppiness, an inability to hold themselves up, a distinctive 'frog-like' leg position with minimal movement, and rapid, shallow breathing visible in the abdomen.
Experts warn these symptoms can be mistakenly attributed to prematurity, as initially happened in Nelson's case. Key red flags parents should watch for include:
- Reduced movement in limbs and poor head control.
- Feeding difficulties or a weak suck.
- Laboured, shallow breathing.
- Frequent chest infections.
- Delays in reaching motor milestones.
Diagnosis is confirmed by a genetic blood test. While some countries screen newborns, the UK does not routinely test for SMA, though campaigners are urging a change.
New Treatments Offer Hope with Early Intervention
Medical advances have transformed the outlook for SMA in recent years. Several disease-modifying therapies, including groundbreaking gene therapy, are now available on the NHS. These treatments can slow or halt disease progression and significantly improve muscle function, but timing is everything.
Because motor neuron damage is irreversible, treatment is most effective when administered before severe weakness develops. Alongside drug therapy, babies require specialised respiratory, nutritional, and physiotherapy support.
By sharing her family's story, Jesy Nelson has been praised for potentially helping other families recognise the signs of spinal muscular atrophy sooner, enabling access to life-saving treatment before it is too late.
