Former Little Mix singer Jesy Nelson has revealed that her twin daughters may never be able to walk.
In a nearly 10-minute video posted to her Instagram on Sunday (Jan. 4), the 34-year-old shared that her daughters, Ocean Jade and Story Monroe Nelson-Foster — who were born prematurely at 31 weeks last May — have been diagnosed with spinal muscular atrophy (SMA) type 1.
“It’s the most severe muscular disease a baby can have,” Nelson explained about two-and-a-half minutes into the video, adding that it affects “every muscle in the body,” including the legs, arms, as well as a child’s ability to breathe and swallow.
“Basically, what it does is slowly destroys the muscles in the body, and if it isn’t treated early enough, your baby’s life expectancy won’t go beyond the age of 2,” she continued.
Nelson said that after several assessments at a London hospital, doctors told her the twins were “probably never going to be able to walk.”
She went on to explain, “They likely won’t regain neck strength, so they will be disabled. The best thing we can do right now is get them the treatment and just hope for the best. Thankfully, the girls have received their treatment, which I’m incredibly grateful for, because without it, they would die.”
The singer also opened up about dealing with “endless hospital appointments” and said she felt like she became a nurse almost overnight after learning how to place her babies on “breathing machines.”
“The reason I wanted to make this video is because the last three months have honestly been the most heartbreaking time of my life. I genuinely feel like my whole life has done a 360,” she shared.
Despite everything, she said she believes her daughters will “defy all the odds” and that with the right support “they will fight this.” Nelson added that she chose to share their diagnosis to help raise awareness and encourage faster diagnoses for other children.
The twins’ father, musician Zion Foster, also reposted the update alongside a smiling photo of the girls, writing, “Still smiling through all the challenges. Daddy loves you so much.”
Nelson first found fame as a member of the hugely successful British girl group Little Mix, formed during the eighth season of The X Factor UK in 2011. The group — made up of Perrie Edwards, Leigh-Anne Pinnock, Jade Thirlwall, and Nelson — dominated the UK charts with hits like “Wings,” “Black Magic,” “Shout Out To My Ex,” and “Touch.”
She unexpectedly exited the group in 2020 and launched her solo career the following year with the single “Boyz” featuring Nicki Minaj. The song’s music video, which samples 2001’s “Bad Boy for Life,” also includes a cameo appearance from Diddy.
According to the BBC, the UK’s National Health Service approved the gene therapy Zolgensma in 2021 for treating babies diagnosed with spinal muscular atrophy. SMA UK explained that the treatment works by delivering a healthy copy of the faulty gene, but it must be administered early, as nerve damage can become permanent.
At present, SMA screening is only available to babies who have an affected sibling. However, SMA UK is pushing for the condition to be included in the routine newborn blood spot test, which already checks for 10 rare but serious illnesses.
The organization estimates that 47 babies were born with SMA in the UK in 2024, and about one in every 40 people carries the gene linked to the condition.
