British pop star Jesy Nelson has shared a devastating health update concerning her infant twin daughters, revealing they have been diagnosed with a severe and rare genetic condition.
A Heartbreaking Diagnosis for the Former Little Mix Star
In an emotional video posted to Instagram on Sunday, the 34-year-old singer confirmed her eight-month-old girls, Ocean Jade and Story Monroe Nelson-Foster, have spinal muscular atrophy (SMA) type 1. Nelson described SMA as the "most severe muscular disease," which impacts every muscle in the body, including those used for leg and arm movement, breathing, and swallowing.
The twins were born prematurely in May to Nelson and musician Zion Foster. Nelson explained it was her mother who first raised concerns that the babies were not showing typical movement in their legs and were having difficulty feeding. While doctors initially cautioned that premature infants reach milestones at different rates, months of extensive testing ultimately led to the grim diagnosis.
"After the most gruelling three, four months, and endless appointments, the girls have now been diagnosed with a severe muscular disease called SMA type 1," Nelson stated through tears in the video.
The Race for Treatment and a Life-Altering Prognosis
Following assessments at London's renowned Great Ormond Street Hospital, Nelson received the shattering news about her daughters' prognosis. She was told they are "probably never going to be able to walk" and will likely never regain neck strength, meaning they will be disabled.
"Essentially, what it does is, over time, it kills the muscles to the body, and if it’s not treated in time, your baby’s life expectancy will not make it past the age of two," Nelson explained.
The singer emphasised that immediate treatment was critical for survival. "Thankfully the girls have had their treatment, which I’m so grateful for," she said. "Because if they don’t have it, they will die." The treatment works to replace the missing gene responsible for the condition, aiming to preserve muscles not yet destroyed.
A Mother's Grief and Hope for the Future
Nelson admitted the hospital has become a second home, and she has had to learn nursing skills to care for her daughters. She described this period as the most heartbreaking of her life, grieving the future she imagined for her children.
"This is the most heartbreaking time of my life, I’m grieving a life I thought I was going to have with my children," she shared. "But at the end of the day they’re still here and that’s the main thing. I truly believe my girls will defy all the odds."
The singer is speaking out publicly to raise crucial awareness about spinal muscular atrophy, stressing that early detection is vital for intervention. According to health authorities, SMA is an inherited condition where nerve cells controlling muscles fail to work properly, leading to progressive weakness and wasting. A child with SMA type 1 rarely lives beyond three years without treatment.
While there is currently no cure for SMA, several promising treatments are undergoing clinical trials. Nelson's brave disclosure highlights the urgent need for awareness and early diagnosis of this rare genetic condition.
