JESY Nelson has revealed her baby twins have been diagnosed with an incurable genetic disease in a devastating video.
In a heart-breaking Instagram post, the singer said her daughters have a severe form of Spinal Muscular Atrophy – and could die without treatment.
Jesy, who welcomed her twin daughters, Ocean Jade and Story Monroe, with partner Zion on May 15, 2025, opened the video by saying she didn’t quite know what to say or how to begin.
She then explained how her mum had told her that she had noticed her baby twins, which were born prematurely last year, were not moving their legs a lot.
Jesy was told not to compare her children’s development to that of others the same age, due to them being premature.
But then she noticed they were not feeding properly either.
“Long story short, 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,” she revealed.
She then explained how it is the most severe muscular disease a baby can get.
Jesy then opened up about how the disease “overtime, it kills the muscles in the body”.
She then said, while choking back tears: “If it’s not treated in time, your baby’s life expectancy will not make it past the age of two.”
Jesy then recalled the “very rapid process” of her baby girls getting treated.
“Me and Zion had to sign lots of forms before they even got their diagnosis,” she added.
“When they assessed the girls at Great Ormond Street, we were told that they will probably never be able to walk.
“They probably will never regain their neck strength, so they will be disabled.
“So the best thing we can do right now is get them treatment and just hope for the best.”
Jesy then revealed that the girls have had their treatment, which she is “so grateful for, because if they don’t have it, they will die”.
“I feel like I’ve almost had to become a nurse in the space of two weeks,” Jesy added, explaining how she has had to put her daughters on breathing machines.
“The reason I wanted to make this video was because, the last few months has honestly been the most heartbreaking time of my life. I feel like my whole life has done a 360.
“I’m grieving a life I thought I was going to have with my children,” she emotionally said, before acknowledging that she is grateful to have them.
“I truly believe that my girls will defy all odds. And with the right help, they will fight this, and go on to do things that have never been done.”
Jesy then said that she wanted to make the video because if the disease is detected early enough in the first few months of a baby’s life “a lot of this stuff could be prevented”.
She then explained how the treatment is where the gene, that they don’t have, is put back in the body.
But Jesy affirmed how “there is no cure for SMA” but added how the treatment can help.
She then detailed some of the symptoms to look out for in babies, such as “floppiness” and not being able to hold their head up on their own.
“If any one is watching this video and they think they see these signs in their child, then please, please take your child to doctor, to the hospital, because time is of the essence.”
