Former Little Mix member Jesy Nelson says twin daughters may never walk due to rare condition

Jesy Nelson, a member of the four-girl band Little Mix, has opened up about the rare genetic condition her twin daughters are facing. 

In an Instagram post, Jesy revealed that her eight-month-old girls, Ocean Jade and Story Monroe Nelson-Foster, have been diagnosed with Spinal Muscular Atrophy Type 1. 

According to Boston Children’s Hospital, Spinal Muscular Atrophy is a rare hereditary genetic condition in which the body’s muscles weaken because nerve cells in the spinal cord and brain do not function properly. 

Type 1 SMA, also known as Werdnig-Hoffman disease, is the most common and most severe form of the condition. It typically appears in newborns or within the first six months of life. Children diagnosed with this type may have limited movement, be unable to sit without support, and experience difficulty breathing, feeding, and swallowing. Many children with Type 1 SMA do not live past the age of two. 

“We were told that they’re probably never going to be able to walk; they probably will never regain their neck strength, so they will be disabled,” Nelson shared. 

Jesy said she hopes her personal experience will serve as a wake-up call for parents who notice similar signs in their children, urging them to seek medical attention as early as possible. She also expressed gratitude that she has the means to provide treatment for her daughters. 

“Please take your child to the doctor, to the hospital, because time is of the essence. Your child will need treatment. And the quicker you get this, the better their life will be,” she added. 

There is no complete cure for SMA yet; however, several treatments have been developed following the discovery of its genetic cause, including the gene replacement therapy Zolgensma and medications such as nusinersen (Spinraza) and risdiplam (Evrysdi). 

Nelson welcomed her twins in May 2025 with her fiancé, Zion Foster.

She announced her pregnancy last January and said she was experiencing rare complications during the twin pregnancy, BBC reported. In March, she said she had undergone an operation to prevent complications related to twin-to-twin transfusion syndrome.