Jesy Nelson reveals twin daughters diagnosed with rare genetic condition Spinal Muscular Atrophy (SMA)

Jesy Nelson has revealed her baby daughters have been diagnosed with a rare genetic condition which means they will “probably never walk”.

The former Little Mix singer explained her eight-month-old girls, Ocean Jade and Story Monroe, have Spinal Muscular Atrophy (SMA), which she described as the “most severe muscular disease”.

The 34-year-old welcomed the girls with her fiancé, Zion Foster, on May 15, 2025 and shared more about how they got the diagnosis in an emotional video on Instagram. 

Watch the video above. 

Nelson said her mum first noticed something wasn’t right with the girls’ movement, but she put it down to something she was told when they were born about being premature and hitting milestones later than other babies. 

But it soon became evident that the twins weren’t showing as much movement in their legs as they should be and they would struggle to “feed properly.”

“After the most gruelling three, four months, and endless appointments, the girls have now been diagnosed with a severe muscular disease called SMA type 1,” Nelson explained. 

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She broke down in tears as she recalled being told that the girls would most likely be disabled as a result of their condition and needed treatment immediately. 

“We were told that they’re probably never gonna 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.

“It is the most severe muscular disease that a baby can get.” 

The new mum was clearly emotional throughout the video, and revealed the devastating way the condition affects the body. 

“Essentially, what it does is, over time, it kills the muscles to the body, and if it’s not treated in time, your baby’s life expectancy will not make it past the age of two,” she said. 

Nelson said she’s “so grateful” they have been able to have treatment and since the diagnosis, she’s become a nurse for them. 

“In the space of two weeks of getting their diagnosis… I have to put them on breathing machines and do lots of stuff that no mother really should ever have to do on their child,” she explained.

“The reason I wanted to make this video was because the last three months have honestly been the most heartbreaking time of my life,” she continued. 

“I literally feel like my whole life has done a 360.”

But she believes Ocean and Story will “defy all the odds” and with the right help “they will fight this.” 

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She finished the video by saying she wanted to share her story to alert other parents to take their baby to the doctor if they noticed similar symptoms because time is so critical when it comes to diagnosing SMA. 

Nelson gave birth to her twins prematurely at 31 weeks, having previously revealed she had experienced rare complications during the pregnancy.

She left the pop group Little Mix in December 2020, and has since gone on to have a career as a solo artist, working with Nicki Minaj on the single Boyz in 2021.

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