Jesy Nelson reveals twin daughters' SMA1 diagnosis, says they may never walk

The former Little Mix member shared the news of her twins' struggle with the rare genetic condition on Instagram

Jesy Nelson has said her twin daughters may never walk after being diagnosed with a rare genetic condition, describing the past months as the most difficult period of her life.

The former Little Mix singer shared an emotional video on Instagram revealing that her twins, Ocean Jade and Story Monroe Nelson-Foster, have been diagnosed with spinal muscular atrophy type 1 (SMA1). Nelson welcomed the girls with her fiancé, Zion Foster, in May after they were born prematurely.

 

 

 

 

View this post on Instagram

 

 

 

 

 

 

 

 

 

 

 

“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, and so the best thing we can do right now is to get them treatment, and then just hope for the best,” she said. Nelson added, “Thankfully, the girls have had their treatment, which you know, I’m so grateful for because if they don’t have it, they will die.”

Nelson explained that the diagnosis followed four months of “gruelling” hospital appointments. She said she decided to speak publicly to raise awareness of the condition, stressing that “time is of the essence” with SMA. She outlined symptoms parents should look out for, including floppiness, difficulty holding themselves up, a “frog-like” positioning of the legs, and rapid breathing in the tummy.

“If anyone is watching this video and they think they see these signs in their child, then please, please take your child to the doctor, to the hospital,” she said.

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 the age of two. Nelson noted the diagnosis was initially missed because the twins were premature and expected to develop more slowly.

“The last few months has honestly been the most heartbreaking time of my life,” she said. “I truly believe that my girls will fight all the odds.”

Nelson has previously spoken about complications during her pregnancy, including twin-to-twin transfusion syndrome, which led to emergency treatment and a premature birth at 31 weeks.