Little Mix’s Jesy Nelson reveals her baby twins’ devastating diagnosis in emotional video

Jesy Nelson has shared the most heartbreaking update of her life — revealing that her baby twin daughters have been diagnosed with a rare genetic disease that can be fatal without urgent treatment.

In a tear-filled video posted to Instagram on Sunday, the former Little Mix star opened up about the terrifying moment she learned her girls are battling the most severe form of a muscle-wasting condition.

Jesy took to Instagram today to reveal the heartbreaking diagnosisCredit: Instagram

Jesy, who welcomed twins Ocean Jade and Story Monroe prematurely at 31 weeks with partner Zion Foster on May 15, 2025, said the babies have been diagnosed with SMA Type 1, also known as Werdnig-Hoffmann disease.

NINTCHDBPICT001023394385 6 Jesy welcomed her twin daughters, Ocean Jade and Story Monroe, with partner Zion Foster on May 15, 2025Credit: Instagram/JesyNelson

The condition is the most aggressive form of Spinal Muscular Atrophy and causes rapid muscle weakness, leading to serious breathing and swallowing problems. Without swift intervention, it is often fatal.

Fighting back tears, Jesy told fans:
“If it’s not treated in time, your baby’s life expectancy will not make it past the age of two.”

Jesy fought back tears describing the twins diagnosisCredit: Instagram/jesynelson

The 34-year-old explained how it was her mum Janice who first noticed something was wrong.

Jesy Nelson kissing a woman on the cheek. 6 Jesy said it was her mum Janice who first noticed an concern with the girlsCredit: Instagram

“A few months ago my mum noticed the girls weren’t moving their legs as much as they should,” she said.
“At the time I wasn’t overly worried because when we left NICU we were told not to compare premature babies to others — that they would reach milestones in their own time.”

Health visitors had described the twins as healthy, and when Jesy and Zion later raised concerns about feeding, they were reassured by GPs not to panic.

But after what Jesy called “the most gruelling three to four months” filled with endless appointments, the devastating diagnosis finally came.

“The girls have now been diagnosed with a severe muscular disease, called SMA Type 1,” she said.

She went on to describe how the condition slowly destroys muscle function across the body.

“Over time, it kills the muscles,” she explained.

Jesy revealed the diagnosis process was frighteningly fast.

“Me and Zion had to sign so many forms before they even got their diagnosis,” she said.
“When the girls were assessed at Great Ormond Street, we were told they will probably never be able to walk. They may never regain their neck strength. They will be disabled.”

She added quietly:
“So the best thing we can do now is get them treatment and just hope for the best.”

Now seven and a half months old, Ocean and Story have since received their treatment — something Jesy says saved their lives.

“I’m so grateful because without it, they would die,” she said.

Opening up about the realities of daily care, Jesy admitted she has had to learn to become a nurse almost overnight.

“I feel like I’ve had to become a nurse in the space of two weeks,” she said, explaining how she now helps her daughters use breathing machines.

“The last few months have honestly been the most heartbreaking time of my life. I feel like my whole life has done a 360.

“I’m grieving the life I thought I was going to have with my children.”

Yet despite the pain, she ended her video with a note of hope.

“I truly believe my girls will defy all odds. With the right help, they will fight this and go on to do things that have never been done.”

Jesy said she wanted to speak out to raise awareness about the importance of early detection.

“If SMA is caught in the first few months, so much of this can be prevented,” she explained, urging parents to watch for warning signs like floppiness or difficulty holding a baby’s head up.

“If anyone sees these signs in their child, please take them to a doctor or hospital. Time is everything.”

Support poured in from fans across social media, with messages praising Jesy’s courage and strength.

Shortly after the video was shared, partner Zion Foster also posted about their daughters. He shared a photo of Ocean and Story in a stroller, tubes attached to their noses — yet both smiling brightly.

Alongside the image, he wrote:
“Still smiling through all the challenges. Daddy loves you so much.”

Source: https://www.dailymail.co.uk/