Former Little Mix singer Jesy Nelson has revealed that her twin daughters have been diagnosed with spinal muscular atrophy type 1 (SMA1), a rare genetic condition that means they are unlikely to ever walk. The 34-year-old and her fiancé, Zion Foster, welcomed Ocean Jade and Story Monroe Nelson-Foster in May after a premature birth.
In an emotional Instagram video posted on Sunday, Nelson said the girls had received treatment for the condition, which without it would be fatal. “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,” she said. She added that the diagnosis came after four months of hospital appointments and that she wanted to raise awareness of the signs of SMA, as “time is of the essence”.
According to the NHS, about 70 children are born with SMA each year in the UK, and without treatment fewer than one in 10 survive to age two. SMA1 is the most severe form, causing muscle weakness, progressive loss of movement and paralysis. Three new treatments, including gene therapy, have been available on the NHS since 2019. NHS Scotland introduced SMA to its newborn screening programme in September last year.
Nelson said the signs of SMA include floppiness, inability to hold oneself up, a “frog-like” leg position with little movement, and rapid breathing in the tummy. Her mother first noticed the twins were not moving their legs as expected, but because they were premature, doctors initially advised not to worry. “The reason I wanted to make this video was because the last few months has honestly been the most heartbreaking time of my life,” the singer said.
Nelson also spoke about her pregnancy complications, including twin-to-twin transfusion syndrome, which required emergency treatment. She gave birth at 31 weeks on 15 May after 10 weeks in hospital. Despite the diagnosis, she 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.”
