Jesy Nelson, the former Little Mix singer, shared a heartbreaking update about her 8-month-old twin daughters, Ocean Jade and Story Monroe, revealing that they have been diagnosed with Spinal Muscular Atrophy (SMA) Type 1, a rare genetic disorder.

In an emotional Instagram video posted on Sunday, Jan. 4, Nelson explained the severity of the condition and the challenges it brings for the family.

"We were told that they're probably never going to be able to walk," Nelson said through tears.

"They probably will never regain their neck strength, so they will be disabled. And so the best thing we can do right now is to get them treatment, and then just hope for the best."

She added that the twins have already started receiving treatment, which she called "life-saving," emphasizing, "If they don't have it, they will die."

Nelson explained that since the diagnosis, she has had to take on the role of a nurse, managing breathing machines and other medical care for the twins.

"I have to put them on breathing machines and do lots of stuff that no mother should ever have to do," she said.

The singer noted that her mother first noticed early signs of trouble when the girls weren't moving their legs as expected.

Spinal Muscular Atrophy is a genetic disorder that weakens certain muscles over time, often starting in infancy.

SMA Type 1, which accounts for about 60% of cases, typically appears in the first six months of life, Billboard reported.

According to the Cleveland Clinic, while there is no cure, treatments and therapies can help manage symptoms.

Jesy Nelson Raises Awareness of Rare Muscle Disorder

Nelson stressed the importance of early diagnosis and treatment, urging other parents to seek medical attention if they notice signs like weak leg movement, a "frog-like" leg position, or rapid tummy breathing.

"If anyone is watching this video and they think they see these signs in their child, then please, please take your child to the doctor," she said.

According to PageSix, Nelson and her fiancé, Zion Foster, welcomed the twins prematurely on May 15, 2025, at 31 weeks, after a high-risk pregnancy involving monochorionic/diamniotic twins who share a placenta.

Despite initial reassurances from doctors that the girls were healthy, small signs of feeding struggles gradually emerged.

The video has received messages of support from fellow celebrities, including JoJo Siwa and others, as Nelson continues to navigate the emotional and physical challenges of caring for her daughters.

"It is the most severe muscular disease that a baby can get," she noted, emphasizing both the seriousness of the diagnosis and her determination to raise awareness for SMA.

Jesy Nelson concluded her heartfelt message by reminding parents that timely treatment can significantly impact outcomes for children with SMA. "The quicker you get this, the better their life will be," she said.

Originally published on Music Times

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