Jesy Nelson reveals twin babies' SMA-1 diagnosis: Understanding symptoms, treatment
What's the story
Former Little Mix singer Jesy Nelson recently revealed that her eight-month-old twin daughters, Ocean Jade and Story Monroe, have been diagnosed with spinal muscular atrophy type 1 (SMA1). The condition could mean they may never walk or regain neck strength. "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," she said in an emotional Instagram video.
Personal struggle
Nelson's emotional journey and awareness campaign
Nelson shared that the diagnosis came after four months of "grueling" hospital appointments. She hopes to raise awareness about the condition and its symptoms. "I just think that I can raise as much awareness about this as possible, and the signs, then, you know, something good has to come out of this," she said. The singer also spoke about complications during her pregnancy, such as twin-to-twin transfusion syndrome (TTTS).
Condition details
What is SMA type 1?
SMA is a genetic disorder that leads to the loss of nerve cells in the spinal cord, causing muscle weakness. The condition is classified into five types based on severity and age of onset. Type 1, also called Werdnig-Hoffman disease, is the most severe form. According to Cleveland Clinic, "Symptoms arise within the first six months of life and include limited head control and decreased muscle tone. Without breathing support, children with type 1 SMA die before their second birthday."
Medical insights
Symptoms and treatment of SMA type 1
Symptoms include reduced head control, decreased muscle tone, lack of reflexes, facial muscle weakness, abnormal breathing, and difficulty swallowing. The condition reportedly affects about 1 in 6,000 to 1 in 11,000 live births. Common treatments include physical therapy, occupational therapy, assisted walking devices like crutches and wheelchairs, speech therapy, assisted ventilation for breathing issues and feeding tubes if swallowing is too difficult. Nelson and her partner, Zion Foster, welcomed the twins prematurely at 31 weeks in May 2025.