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.
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Jesy took to Instagram today to reveal the heartbreaking diagnosisCredit: Instagram
Jesy welcomed her twin daughters, Ocean Jade and Story Monroe, with partner Zion Foster on May 15, 2025Credit: Instagram/JesyNelson
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.
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“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”.
Spinal Muscular Atrophy: Signs and symptoms
Spinal muscular atrophy is a disease which takes away a persons strength and it causes problems by disrupting the motor nerve cells in the spinal cord.
This causes an individual to lose the ability to walk, eat and breathe.
There are four types of SMA – which are based on age.
- Type 1 is diagnosed within the first six months of life and is usually fatal.
- Type 2 is diagnosed after six months of age.
- Type 3 is diagnosed after 18 months of age and may require the individual to use a wheelchair.
- Type 4 is the rarest form of SMA and usually only surfaces in adulthood.
What are the symptoms?
The symptoms of SMA will depend on which type of condition you have.
But the following are the most common symptoms:
• Floppy or weak arms and legs
• Movement problems – such as difficulty sitting up, crawling or walking
• Twitching or shaking muscles
• Bone and joint problems – such as an unusually curved spine
• Swallowing problems
• Breathing difficulties
However, SMA does not affect a person’s intelligence and it does not cause learning disabilities.
How common is it?
The majority of the time a child can only be born with the condition if both of their parents have a fault gene which causes SMA.
Usually, the parent would not have the condition themselves – they would only act as a carrier.
Statistics show around 1 in every 40 to 60 people is a carrier of the gene which can cause SMA.
If two parents carry the faulty gene there is a 1 in 4 (25 per cent) chance their child will get Spinal muscular atrophy.
It affects around 1 in 11,000 babies.
“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.”
