Jesy Nelson is once again sharing a heart-wrenching glimpse into the health of her twin daughters, 7-month-old Ocean Jade and Story Monroe. Just days after the Little Mix alum revealed that her and fiancé Zion Foster's twin daughters had been diagnosed with Spinal Muscular Atrophy Type 1 (SMA), a genetic disorder that causes muscle weakness, she detailed the notable symptoms her babies exhibited after birth.
"I actually saw all the signs before I knew what SMA was," Jesy, 34, said during her Jan. 6 appearance on UK's This Morning. "But before I left the NICU [Neonatal Intensive Care Unit], it was hammered into me, 'Don't compare your babies. They're not going to reach the same milestones because they're premature.'" With this in mind, the "Sweet Melody" singer admitted to being "concerned" about their immune system once they returned home from the hospital.
"The only thing I was worried about was checking their temperature and making sure they were still breathing," she explained. "I wasn't checking to see if their legs were still moving." However, Jesy and her mom Janice White noticed small changes in the twins' shape as they started to grow, including how they used to "lay in a frog leg position."
"I remember bringing them home and laying them down on their mat, and saying to my mom, 'They breathe from their belly,'" she recalled. "We also had healthcare visitors coming around saying, 'Oh, they're fine. They're healthy, they're doing well.' And it took for my mom to be like, 'They don't move their legs how they should be moving.'"
And while Jesy initially believed Ocean and Story's symptoms were a result of them being premature, she also started to realize their leg movements were regressing. "That's what's frustrating. If these were the cards that I was always going to get dealt with and there was nothing I could do about it, then it's almost easier for me to accept," she noted. "But when you know there's something that can be done and it's life-changing? That's the part I cannot accept, and that's why I'm going to shout it from the rooftops about this."
Indeed, the X Factor star has been advocating for her daughters' health since they were diagnosed with SMA Type 1, which affects about 60% of infant cases, according to the Cleveland Clinic. And with this being a progressive condition, her toddlers have already received a one-off infusion, a treatment that "stops any of the muscles that are still working from dying."
Though Jesy and Zion—who got engaged last September after three years of dating—are grateful they got the diagnosis early, they were also told their daughters' lives would be greatly altered by the disease. "We've been told that they will probably never walk, they probably will never regain their neck strength and they're going to be in wheelchairs," she expressed. "But there have been so many stories where parents have been told this and then their children have gone on to do incredible things. I believe we have to manifest that into existence."
