Jesy Nelson, former member of the band Little Mix, has opened up about her twin daughters’ battle with a severe genetic condition known as Spinal Muscular Atrophy Type 1 (SMA Type 1). The singer expressed her hope that her nine-month-old daughters, Ocean Jade and Story Monroe, will surpass their two-year life expectancy as they undergo treatment for this debilitating disease.
During an appearance on the podcast hosted by Jamie Laing on February 4, 2024, Nelson explained the gravity of her daughters’ condition. “SMA is a muscular wasting disease, so they don’t have a gene that we all have in our body,” she stated. This genetic disorder leads to progressive muscle weakness, affecting vital functions such as breathing and swallowing. Without timely treatment, the prognosis for infants diagnosed with SMA Type 1 can be dire.
“It’s not OK, but it is what it is,” Nelson said, reflecting on the challenges she faces. “I just have to accept it and try and make the best out of this situation… My girls are the strongest, most resilient babies, and I really believe that they are going to defy all the odds.”
Nelson also shared the difficulties she faced during pregnancy, including twin-to-twin transfusion syndrome (TTTS). The condition, which affects a small percentage of identical twins, can lead to significant health complications if not managed properly. “If you don’t get treatment for that, they will die. It’s like, 95 per cent that they won’t survive,” she explained, highlighting the precarious beginning her daughters faced.
The twins were born prematurely at just 31 weeks. Nelson revealed that it was her mother who first noticed that the girls were not moving their legs as expected. Initially, she did not worry, adhering to medical advice that premature babies often do not reach the same milestones as full-term infants. “When the healthcare visit came, we were told, ‘They look great, they’re healthy and everything is fine,’” she recalled.
As time progressed, however, it became evident that something was amiss. Nelson described the emotional toll of the diagnosis process over several months, which culminated in the heartbreaking news of the SMA Type 1 diagnosis. “Long story short, after the most grueling three to four months and endless appointments, the girls have now been diagnosed with a severe muscle disease called SMA Type 1,” she said.
In her candid discussion, Nelson reflected on her emotional journey. She admitted to experiencing moments of despair and self-pity. “Before, things that now seem so ridiculous to me that I used to worry about… I’d sit in bed and cry and feel sorry for myself,” she shared. Yet, she acknowledged that her daughters’ resilience has helped her find strength. “What gives me the reason to be sad?” she questioned, inspired by her daughters’ ability to remain joyful despite their struggles.
The challenges faced by Jesy Nelson and her daughters serve as a stark reminder of the realities many families encounter in the face of severe health issues. With a strong support network and her unwavering hope, Nelson continues to advocate for her daughters as they navigate their treatment journey.
