Former Little Mix singer Jesy Nelson has revealed that her twin daughters have been diagnosed with a devastating physical condition, sharing the news in an emotional video posted to Instagram.
The 34-year-old broke down in tears as she spoke about Ocean Jade and Story Monroe Nelson-Foster, who were born in May last year and are now eight months old.
“The girls have been diagnosed with a severe disease called SMA type one,” Ms Nelson said in the footage. “It stands for spinal muscular atrophy which affects every muscle in the body, from legs, arms, swallowing.”
Spinal muscular atrophy causes progressive muscle weakness and wasting due to the loss of motor neurons.
Jesy Nelson gave birth to her twin girls in May
|Ms Nelson explained that the first concerns arose when her mother noticed the twins were not moving their legs as much as expected several months ago.
“It wasn’t really a concern to me at the time,” she said. “From the minute I left NICU I was told, ‘Your babies are premature so don’t compare your babies to other babies. They won’t reach the same milestones, take them as they are.’”
As a first-time mother, Ms Nelson said she did not initially find the situation alarming, particularly as health visitors repeatedly reassured her that the girls were healthy.
Further warning signs emerged when the twins began experiencing feeding difficulties.
Ms Nelson's twin daughters, Ocean Jade and Story Monroe, were born two months premature
|Despite raising concerns with her GP, Ms Nelson said she was advised to feed them “little and often” and told there was no cause for concern.
After three to four months of repeated appointments and mounting anxiety, the family were referred for further tests and the twins were assessed at Great Ormond Street Hospital.
“When they assessed the girls at Great Ormond Street, we were told they were never going to be able to walk,” Ms Nelson revealed.
“They would probably never regain their neck strength. They will be disabled.”
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Doctors also warned that the condition is life-threatening if left untreated.
“Over time it kills the muscles in the body,” she explained. “If it’s not treated in time, your baby’s life expectancy will not make it past the age of two.”
Ms Nelson said the pace of events accelerated dramatically once the diagnosis was confirmed, stressing that early intervention was critical with SMA type one.
Both Ocean Jade and Story Monroe have now received treatment, which the singer described as life-saving.
“Thankfully the girls have had their treatment which I’m so grateful for,” she said. “If they didn’t have it they would die.”
Since the diagnosis, the hospital has effectively become her second home. Within two weeks, Ms Nelson said she was forced to take on responsibilities no parent ever expects.
“I feel like I’ve had to become a nurse within two weeks of getting the diagnosis,” she said. “I’ve had to do stuff no mother should have to do on their child.”
The singer is now caring for her daughters around the clock. Their pregnancy had already been high-risk, with Ms Nelson previously revealing the twins suffered from twin-to-twin transfusion syndrome and required emergency surgery before birth.
Jesy Nelson has been repeatedly open with her followers about being a parent in the NICU
|Ms Nelson became visibly emotional as she reflected on the toll the past months have taken on her family.
“I made this video because the last three months have been the most heartbreaking time of my life,” she told fans.
Despite the devastating prognosis, she said she remains grateful that her daughters are alive.
“I know I have to be grateful,” Ms Nelson said through tears. “At the end of the day they are still here and that’s the main thing. They’ve had their treatment.”
She ended the video on a note of hope, expressing her belief in her daughters’ resilience.
“I truly believe that my girls will defy all the odds and with the right help they will fight this,” she said.
Fans and fellow celebrities quickly flooded Jesy Nelson’s comments with messages of support.
Her ex-boyfriend and Love Island star Chris Hughes wrote: “A warrior Jess. Be easy on yourself. Sending prayers to you all, everyone behind you guys.”
The Traitors season three winner Leanne Quigley added: “Sending so much love and prayers to you and your brave girls.”
Singer Kamille commented simply: “I’m so sorry, sending so much love.”
Twelve-year-old George Tappenden, who lives with spinal muscular atrophy type two, also shared an emotional message of reassurance.
“I have spinal muscular atrophy type 2 Jesy,” he wrote. “Treatments have only been around for five years, but prior to that there was nothing and SMA was the number one genetic killer of children. But now there is hope.
“So your children, I promise, will be fine. I didn’t start treatment until I was seven. Yes I will never walk and my muscles are weak, but my mind is sharp and I’m living a great life. Please do not worry. It will all be ok.”
The author of The Blissful Baby Expert encouraged Nelson to campaign for early testing, writing: “Sending lots of love @jesynelson. If SMA could be included in the newborn heel prick test, that would save so many families. With your following, a petition could reach the 100,000 signatures needed for parliamentary debate.”
Fans also shared their own experiences of the condition.
“My little boy has SMA type one and he’s nearly nine,” one wrote. “It’s a devastating shock but treatments have come so far. Your girls will do amazingly.”
Another parent added: “Diagnosis is the worst time in your life, but I promise things will get easier. You’ve got this Jesy.”