Jesy Nelson has shared a personal and emotional update about her family. She tearfully revealed that her twin daughters have been diagnosed with a rare and serious genetic condition. The former Little Mix singer disclosed the news in an Instagram video, explaining that her daughters, Ocean Jade and Story Monroe Nelson-Foster, have spinal muscular atrophy, known as SMA.
Nelson welcomed the twins prematurely last May with her partner, musician Zion Foster, and said the diagnosis came after months of medical evaluations and concerns about their physical development.
Jesy Nelson Opens Up About Her Twins’ Diagnosis
In the video, Nelson said her concern grew after noticing that her daughters were not moving their legs as expected and were struggling to feed properly.
“After the most gruelling three to four months and endless appointments, the girls have now been diagnosed with a severe muscular disease called SMA type 1,” she said.
Nelson described SMA as “the most severe muscular disease,” explaining, “It does affect every muscle in the body, down to legs, arms, breathing, and swallowing.
Treatment, Care, and Daily Challenges
Nelson shared that her daughters have since begun treatment, something she said she is “so grateful for.”
“Because if they don’t have it, they will die,” she said.
Since receiving the diagnosis, Nelson explained that she has taken on an intensive caregiving role, including helping place one of her daughters on breathing machines. Reflecting on the emotional toll, she described the experience as overwhelming.
“The last three months have honestly been the most heartbreaking time of my life,” she said. “I literally feel like my whole life has done a 360.”
Despite the challenges ahead, Nelson said she remains hopeful, expressing belief that her daughters will “defy all the odds.” With continued care and support, she added, “They will fight this.”
Raising Awareness and Looking Ahead
Nelson said she decided to share her family’s journey in hopes of helping other parents recognize warning signs early and pursue a diagnosis as quickly as possible.
After resharing her message, Foster posted a smiling photo of her adorable daughters with the caption: “Still smiling through all the challenges. Daddy loves you so much.”
According to the Cleveland Clinic, Spinal muscular atrophy (SMA) is a genetic condition that causes worsening muscle weakness that can be life-threatening in early childhood if left untreated.
The BBC reported in 2021 that gene-based therapies such as Zolgensma have been approved by the NHS, offering life-changing outcomes when administered early.
Advocacy organizations, including SMA UK, continue to campaign for expanded newborn screening, aiming to ensure more babies receive timely diagnosis and treatment.
