Little Mix alum jesy nelson offers insight into her life after her twin daughters, Story and Ocean, were diagnosed with a serious muscle disease.
“I’m so in love with her little giggle,” Nelson, 34, wrote via her Instagram Stories, sharing a sweet photo of one of her babies sleeping. In the footage, a feeding tube could be seen stuck to the baby’s face.
Nelson revealed earlier this month that her two daughters were diagnosed with spinal muscular atrophy (SMA) type 1. SMA, according to the Cleveland Clinic, is a genetic disease that worsens muscle weakness. There are five types of SMA, which can vary in severity.
“A few months ago, my mom noticed that the girls weren’t showing as much movement in their legs as they should be,” Nelson said. a video on social media from January 4. “(At the time) I wasn’t really worried because from the moment I left the NICU, they told me, ‘Your babies are premature, so don’t compare your babies to other babies.’ They will not reach the same milestones. Take them as they are.”
Nelson and his fiance, Zion Foster, they welcomed their children prematurely in May 2025 following the singer’s high-risk twin pregnancy.
After Nelson and Foster, 27, brought their daughters home, they began noticing certain “signs” that would become the hallmarks of the girls’ SMA diagnoses.
“They were struggling to feed themselves properly. Little by little, it was less and less,” he said. “Long story short, after the most grueling three (or) four months and endless appointments, the girls have now been diagnosed with a serious muscle disease called SMA type 1. Type 1 is the most severe type a baby can get. It means spinal muscular atrophy, which can affect every muscle in the body from legs, arms, breathing, swallowing and over time in the muscles.”
Nelson continued, “If not treated in time, your baby’s life expectancy will not exceed 2 years.”
Once Story and Ocean were diagnosed with SMA, doctors informed Nelson and Foster that their children would likely never “walk” and would need wheelchairs.
“They’re probably never going to get their strength back, so they’re going to be disabled. The best thing we can do right now is get them treated and hope for the best,” Nelson said. “I’m so grateful because if they don’t have it, they’re going to die. It’s been endless and endless hospital appointments. I practically feel like the hospital has become my second home.”
Nelson is mostly glad her babies are “still here” and have undergone treatments.
“They’ve had their due and I really believe my girls will defy all the odds,” she concluded. “With the right help, they’re going to fight this and continue to do things that have never been done before.”
Nelson later shared an update on his children during an interview on Wednesday, January 7 in the UK. this morning talk show
“They’re still smiling, they’re still happy,” he said. “They have each other, and that’s the biggest thing that I’m really thankful for because they could be doing this alone, but they’re twins and they’re going through this together, and I think that’s beautiful. All I can do is try my best to be there for them. Give them positive energy.”