Former Little Mix singer Jesy Nelson says her twin daughters might never be able to walk.
In a nearly 10-minute video shared to her Instagram on Sunday (Jan. 4), the 34-year-old singer said that her daughters, Ocean Jade and Story Monroe Nelson-Foster, born prematurely at 31 weeks last May, have been diagnosed with spinal muscular atrophy (SMA) type 1.
“It is the most severe muscular disease that a baby can get,” Nelson explained about two-and-a-half minutes into the video above, saying it affects “every muscle in the body” including legs, arms, and the ability to breathe and swallow.
“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 2," she continued.
She said assessments at a London hospital led doctors to tell her the twins were "probably never going to be able to walk.”
Nelson added, “They probably will never regain their neck strength, so they will be disabled. The best thing we can do right now is to get them treatment and then just hope for the best. Thankfully, the girls have had their treatment, which you know I'm so grateful for, because if they don't have it, they will die.”
She also described “endless amounts of hospital appointments,” and feeling like she became a nurse in a matter of weeks after having to learn to put her children on “breathing machines.”
"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," the singer noted.
Despite this, she said she believes her daughters will "defy all the odds" and that with the right help "they will fight this," adding that she shared the diagnosis to help other children be diagnosed as quickly as possible.
The children’s father, musician Zion Foster, also shared the post with a smiling photo of the twins, writing, "Still smiling through all the challenges. Daddy loves you so much."
Nelson rose to fame as a member of the successful British girl band Little Mix, which was assembled on the eighth season of The X Factor UK in 2011. The group, which also consisted of members Perrie Edwards, Leigh-Anne Pinnock, and Jade Thirlwall, stormed the UK charts with hits like “Wings,” “Black Magic,” “Shout Out To My Ex,” and “Touch.”
Nelson abruptly left the group in 2020 and debuted as a soloist the following year with the single “Boyz” featuring Nicki Minaj. The music video for the track, which samples 2001's "Bad Boy for Life," also features a cameo from Diddy.
According to the BBC, the National Health Service approved the gene therapy Zolgensma in 2021 to treat babies with spinal muscular atrophy. SMA UK explained that the drug works by delivering a healthy copy of the faulty gene but must be given early because nerve damage can become irreversible.
Currently, screening for SMA is only offered to babies with an affected sibling, but SMA UK is calling for the condition to be added to the routine newborn blood spot test, which already screens for 10 rare but serious diseases.
The organization estimates that 47 babies were born with SMA in the UK in 2024, while around one in 40 people carry the gene that can cause the condition.