Jesy Nelson reveals her twins may never walk after heartbreaking incurable muscle disease diagnosis

4 January 2026, 11:56 | Updated: 5 January 2026, 14:16

Jesy Nelson has opened up about her twin girls being diagnosed with SMA Type 1. Picture: Instagram

By Abbie Reynolds

Jesy Nelson has bravely shared that her twin daughters have been diagnosed with an incurable muscle disease and will likely never walk.

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After battling through a high-risk pregnancy, former Little Mix star Jesy Nelson welcomed her twin babies, Ocean Jade Nelson-Foster and Story Monroe Nelson-Foster, with fiancé Zion Foster in May 2025.

While the girls were premature, Jesy shared that they were "healthy and fighting strong". Now, as the babies near eight months old, Jesy has taken to social media to share a heartbreaking diagnosis in the hopes of spreading awareness.

In a video shared with her fans, Jesy said: "After the most gruelling three, four months, and endless appointments, the girls have now been diagnosed with a severe muscle disease called SMA Type 1.

Read more: Jesy Nelson reveals she had a 'threatened miscarriage' at the start of her twin pregnancy

Jesy Nelson and Zion Foster with their twins Ocean and Story. Picture: Instagram

"For those of you that don't know What SMA Type 1 is, it is the most severe muscular disease that a baby can get."

According to the NHS, Spinal muscular atrophy (SMA) is a rare genetic condition that can cause muscle weakness. It gets worse over time, but there are medicines and other treatments to help manage the symptoms.

The mother-of-two explained: "It stands for spinal muscular atrophy, which can affect. Well, it does affect every muscle in the body, down to legs, arms, breathing, swallowing.

"And essentially what it does is, over time, it kills the muscles in the body and if it's not treated in time, your baby's life expectancy will not make it past the age of two."

Jesy shared that as soon as doctors suspected the babies had SMA Type 1 the process to treatment was swift. Despite this, because of when it was discovered she's been told the girls will likely never walk and won't regain the muscles in their neck.

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The singer went on to say: "The reason I wanted to make this video was because the last three months has honestly been the most heartbreaking time of my life.

"I literally feel like my whole life has done a 360. I almost feel like I'm not grieving a life that I thought I was going to have with my children."

She explained that if SMA Type 1 is detected early enough, a lot of the symptoms can be prevented.

Talking about how the treatment works she added: "When they get the treatment, essentially what it does is it puts the gene back in the body that they don't have, and it stops any muscles that are working from dying.

"But ones that have already gone cannot be regained. There is no cure for SMA, there's only treatment that can help. It's just frustrating because there's so many children that have been detected from birth because they've had a heel prick at birth, and they've, you know, been detected that they have SMA Type 1.

"And then they've had the treatment, and then these children have gone on to walk, they've gone on to live how children should live."

Jesy Nelson and Zion Foster in the NICU with their babies Ocean and Story. Picture: Instagram

Jesy shared that the things parents should look out for so that the muscle disease can be detected early include "floppiness" and the inability to sit up without support.

"The signs to look for are floppiness. Your baby won't be able to hold themselves up without any support. Their legs go in like a frog like position without much movement. They have like bell shaped bellies. Their breathing is quite rapid within their tummy," she explained.

"But the main thing I want to get across here is that, you know, this can, majority of this can be prevented if it's detected from birth and all it takes is a heel prick.

"It's not in this country, there are many countries where it is tested at birth with just a simple heel prick. And I don't think anyone understands like how much this can change your child's life."

Zion Foster dancing with one of the twins. Picture: Instagram

The 'Boyz' singer revealed that she hadn't been concerned by some of the symptoms displayed in her babies because they were so premature.

"From the minute that I left NICU, 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 to where they need to be when they do'," she explained after sharing that her mum had pointed out that the girls weren't displaying much movement in their legs.

She also shared that they'd had problems feeding but had been assured by GPs that this was normal.

Jesy Nelson holding one of the twins. Picture: Instagram

Jesy ended the video saying: "But 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, to the hospital because time is of the essence and your child will need treatment.

"And the quicker you get these, the better their life will be. Thank you for listening guys."