JESY Nelson has revealed her baby twins have been diagnosed with a devastating genetic disease which can be fatal.
In a heart-breaking video, the singer said her daughters have the most severe form of a rare muscle wasting disease – and could die before the age of two 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 gave birth to her twins Ocean Jade and Story Monroe prematurely at 31 weeks with partner Zion on May 15, 2025, broke down as she described how the devastating diagnosis emerged.
The twins, she said, had now been diagnosed with a condition called SMA Type 1, or Werdnig-Hoffmann disease, the most severe form of Spinal Muscular Atrophy.
The lifelong disabling condition causes dramatic muscle weakness with severe breathing and swallowing issues and is commonly fatal without radical treatment.
Tearful Jesy said: “If it’s not treated in time, your baby’s life expectancy will not make it past the age of two.”
The Little Mix star described how it was her mum Janice who had first showed concern about the twins soon after they were born.
She said: “A few months ago my mum noticed that the girls were not showing as much movement in their legs as they should be.
“It wasn’t really a concern to me at the time because from the minute I left NICU (Neonatal Intensive Care Unit), I was told ‘your babies are premature, so do not compare your babies to other babies. They won’t reach the same milestones, take them as they are and they will get where they need to be when they do’.”
Jesy said health visitors had also described the babies as ‘great and healthy’ and when the couple then became concerned about their feeding were advised by GPs not to worry.
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She then described the shocking development as they sought further advice.
She said: “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 then explained how it is the most severe muscular disease a baby can get.
Jesy opened up about how the disease “overtime, it kills the muscles in the body”.
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, now seven and a half months old, 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.”
Jesy fought back tears describing the twins diagnosisCredit: Instagram/jesynelson
Jesy said it was her mum Janice who first noticed an concern with the girlsCredit: Instagram
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.”
Fans flocked to the comments section to support Jesy amid her twins’ diagnosis.
“My hearts is shattered. Sending you nothing but love and prayers for your two little angels,” penned one.
“I’m in awe of your strength and bravery… the best mama ever! Love you guys so much,” added a second.
Shortly after Jesy shared the highly emotional video, her partner Zion Foster spoke out about their daughters’ diagnosis.
Taking to his Instagram page, Zion shared a photo of his daughters in what looked a stroller.
With tubes attached to their noses, the two tots could still be smiling widely.
Alongside the photo, Zion wrote: “Still smiling through all the challenges.
“Daddy loves you so much.”
Jesy and Zion have been through a gruelling few months of hospital appointments with their two baby girlsCredit: jesynelson/Instagram
Jesy urged people to look out for the symptoms of SMA Type 1 to catch an early diagnosisCredit: Instagram