Pop Singer’s Infant Twins Diagnosed With a ‘Severe Muscular Disease’

Singer Jesy Nelson is opening up about a debilitating condition she says her twin daughters are facing. The singer took to Instagram to reveal that her baby girls might never be able to walk as they have been diagnosed with spinal muscular atrophy (SMA) type 1.

SMA is the most severe form of a muscular disorder one can have. It is characterized by severe muscle weakness, floppy limbs (hypotonia), poor head control, and difficulty with breathing and feeding, appearing from birth or within the first six months, often leading to respiratory failure and shortened life expectancy.

Early detection is key. Though, the disease is rare.

In a nearly 10-minute video shared to her Instagram on Sunday (Jan. 4), the 34-year-old Little Mix singer said that her daughters, Ocean Jade and Story Monroe Nelson-Foster, were born prematurely at 31 weeks last May. She said the disease 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. The singer also revealed that an assessment 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 said the medical care is never ending, saying there have been “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.” She added: “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.

Regardless, she is keeping hope alive, saying 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.”