Jesy Nelson Reveals Twin Babies May Never Walk After Rare Genetic Diagnosis
Jessie Nelson, who used to be in the band Little Mix, has opened up about her twin daughters being diagnosed with a rare genetic condition that might prevent them from ever walking. The 34-year-old singer shared an emotional video explaining that after learning her daughters have spinal muscular atrophy, they will face every challenge head-on. Doctors found the rare genetic disorder, which means the twins might never walk, but Jessie said they will “battle all challenges.”
Jessie and her partner, Zion Foster, became parents to their twin girls, Ocean Jade and Story Monroe Nelson-Foster, in May; the babies were born early. In an emotional Instagram video shared on Sunday, Nelson revealed the girls have been diagnosed with spinal muscular atrophy type 1 (SMA1). She mentioned, “We were told they may never walk; they may never regain neck strength, meaning they would be disabled. Right now, the best we can do is get them treatment and hope for the best.” She added, “Thankfully, the girls have received treatment, and I’m incredibly grateful for that — because without it, they would not have survived.”
Nelson explained that after four tough months filled with doctor’s visits, the condition was finally identified. She expressed her desire to raise awareness about SMA and its symptoms, emphasizing that “time is everything” with this disease. SMA1 is the most severe and common type of a genetic neuromuscular disorder, leading to muscle weakness, decreased movement over time, and paralysis. She further stated, “If I can raise as much awareness as possible about this condition and its symptoms, then something good will come from it.” Nelson described the warning signs she observed, such as floppiness, an inability to hold themselves up, a “frog-like” leg position with minimal movement, and fast belly breathing. She urged parents, “If anyone watching this video thinks their baby has these symptoms, please take your child to a doctor or hospital immediately.
It’s really important to act fast with your baby’s treatment because time is so valuable, and getting it done sooner will make a huge difference in their life. The NHS reports that about 70 babies in the UK are born with SMA each year, and without treatment, most of them don’t make it past their second birthday. SMA UK, a charity, emphasizes that catching the condition early is key to improving how well babies do. This charity also points out that it’s quite concerning that the UK isn’t including SMA in the newborn blood-spot test, which is typically done when a baby is five days old and already checks for nine other serious issues. Over the past few years, the NHS has brought in three treatments for SMA that can really change things, including gene therapies that can alter how the disease progresses.
Last September, NHS Scotland started a two-year trial to include SMA in its newborn screening. Authorities mentioned that babies who received treatment before any symptoms showed up were often able to develop normally. Nelson explained that they first suspected something was wrong when her mother noticed the twins weren’t moving their legs much and later had trouble feeding. But because the twins were born early, they were initially told their developmental delays were normal and were advised not to worry during their early check-ups.
Jessie said, “I made this video because the past few months have honestly been the most heartbreaking of my life.” “I feel like my entire life has turned 360 degrees. It feels like I’m grieving the life I imagined having with my children. But I have to be grateful — they are still here, and that’s what matters most, and they’ve received treatment.” “I truly believe my daughters will fight through everything, and with the right help, they will overcome this and achieve things that were once thought impossible.”
The singer has previously spoken about complications during her pregnancy, including twin-to-twin transfusion syndrome (TTTS), which affects 10–15% of identical twins who share a placenta and can have serious consequences. She underwent an emergency procedure and spent 10 weeks in the hospital before giving birth prematurely at 31 weeks on May 15.
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