Former Little Mix singer Jesy Nelson has shared an emotional update about the health of her twin daughters, revealing they have been diagnosed with a rare and severe genetic condition.
A Heartbreaking Diagnosis for the New Family
The 34-year-old artist and her fiancé, Zion Foster, welcomed their twin girls, Ocean Jade and Story Monroe Nelson-Foster, in May. The babies were born prematurely at 31 weeks. In a candid video posted on Instagram, Nelson disclosed that after four months of gruelling hospital appointments, the twins have been diagnosed with spinal muscular atrophy type 1 (SMA1).
"We were told that they’re probably never going to be able to walk; they probably will never regain their neck strength, so they will be disabled," Nelson explained. She emphasised that immediate treatment was critical, stating, "if they don’t have it, they will die." Thankfully, the infants have now received their first course of treatment.
Raising Awareness of SMA Symptoms
Nelson stated that her primary reason for speaking out was to raise awareness of the condition and its early signs, stressing that "time is of the essence" for effective intervention. She described key symptoms parents should watch for, which include:
- General floppiness and an inability to hold themselves up.
- A "frog-like" positioning of the legs with little movement.
- Rapid breathing visible in the tummy.
She urged any parent noticing these signs to seek medical help immediately. The diagnosis came after Nelson's own mother observed that the twins were not moving their legs as expected. Initial concerns were dismissed due to their premature birth, highlighting the challenges of early detection.
The Fight for Early Screening and Treatment
Spinal muscular atrophy is a neuromuscular disorder that causes progressive muscle weakness and loss of movement. According to the NHS, approximately 70 babies are born with SMA each year in the UK. Without treatment, fewer than 10% survive beyond the age of two.
Charity SMA UK notes that early detection is critical for better outcomes, yet the UK does not currently include SMA in its standard newborn blood-spot screening test. This is despite the availability of three "transformative" new medicines on the NHS since 2019, including gene therapy. In a positive step, NHS Scotland began a two-year pilot last September to screen newborns for SMA.
Nelson's pregnancy was already complicated by twin-to-twin transfusion syndrome (TTTS), requiring an emergency procedure and a 10-week hospital stay before the early birth. Despite the immense challenges, the singer remains hopeful. "I truly believe that my girls will fight all the odds and, with the right help, they will fight this and go on to do things that have never been done," she said.
