3 days ago

Noor NanjiCulture correspondent

BBC

Former Little Mix star Jesy Nelson has revealed that her twin baby daughters have been diagnosed with a rare genetic condition which means they will "probably never walk".

The singer gave birth to Ocean Jade and Story Monroe Nelson-Foster prematurely last May with musician Zion Foster.

On Sunday, Nelson said in an Instagram video that the girls have Spinal Muscular Atrophy (SMA), which she described as the "most severe muscular disease".

"It does affect every muscle in the body, down to legs, arms, breathing, swallowing," she said.

In the video, she explained that her daughters had not been showing as much movement in their legs as they should be, and were struggling to feed properly.

"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 said.

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

Nelson said that the girls were assessed at Great Ormond Street Hospital in London.

There, she said, she was told that her daughters were "probably never going to be able to walk. They probably will never regain their neck strength, so they will be disabled".

She added that they have since had treatment, which she was "so grateful for".

"Because if they don't have it, they will die."

Nelson said she had to act as a nurse and put her daughter on "breathing machines" since the diagnosis.

"The reason I wanted to make this video was because the last three months have honestly been the most heartbreaking time of my life. I literally feel like my whole life has done a 360."

But she said she believed her daughters would "defy all the odds" and that with the right help, "they will fight this".

She added that she wanted to share the diagnosis to help other children to get diagnosed as fast as possible.

After resharing Nelson's story, partner Foster posted a smiling image of the twins with the caption: "Still smiling through all the challenges. Daddy loves you so much."

Getty Images

The singer wants to help other children get a diagnosis as fast as possible

Nelson, 34, gave birth to her twins prematurely at 31 weeks, having previously revealed she had experienced rare complications during the pregnancy.

In an Instagram post in October, she said she had "never felt prouder" of her body following the birth of her girls, adding that becoming a mother made her "realise how incredible my body actually is".

Nelson left Little Mix in December 2020, and has since released music as a solo artist, including the single, Boyz, featuring Nicki Minaj, in 2021.

SMA is a progressive muscle-wasting disease that can cause death within two years if untreated.

In 2021, a life-changing gene therapy drug called Zolgensma was approved by the NHS to treat babies with the disease.

According to SMA UK, the drug delivers a healthy copy of the affected gene to the body, but timing is critical because irreversible damage may have already occurred in the nervous system.

At present, screening for SMA is only carried out on those who have a sibling with the condition.

SMA UK wants the disease to be added to a blood spot test that already checks newborn babies for 10 rare but serious conditions.

According to the charity, an estimated 47 babies were born with the condition in the UK in 2024, although about one in 40 people carry the altered gene that can cause the disease.