Jesy Nelson’s Courageous Battle: Twins’ SMA Type 1 Diagnosis and Journey of Hope
Jesy Nelson’s Emotional Journey: Twins’ SMA Type 1 Diagnosis
Jesy Nelson, the celebrated singer and former Little Mix star, has recently shared a poignant update about her twin daughters, Ocean Jade and Story Monroe. In a heartfelt video on her Instagram, Jesy revealed that her twins have been diagnosed with Spinal Muscular Atrophy (SMA) Type 1, a severe muscular disease that affects infants.
The Devastating Diagnosis
SMA Type 1 is a rare and severe condition that impacts the muscles, presenting significant challenges for affected children. Jesy explained that this disease is the most severe muscular condition a baby can have, and it can be life-threatening if not treated promptly. The condition causes muscle weakness and can affect essential functions such as breathing and swallowing.
The Treatment Process
Jesy shared that the treatment process for SMA Type 1 is rapid and time-sensitive. She and her partner, Zion, were informed during their daughters’ assessment at Great Ormond Street Hospital for Children that the girls might never be able to walk and could face lifelong disabilities. Despite the grim prognosis, Jesy remains hopeful and determined to provide the best care for her daughters.
Jesy’s Emotional Struggle
The past few months have been incredibly challenging for Jesy. She has spent countless hours in hospitals, becoming almost like a nurse to her twins. She has had to learn how to use breathing machines and perform medical procedures that no mother should ever have to do. Jesy described this period as the most heartbreaking time of her life, feeling as though she is grieving the life she thought she would have with her children.
A Message of Hope and Awareness
Despite the difficulties, Jesy remains optimistic about her daughters’ future. She believes that with the right treatment and support, her girls will defy the odds and overcome the challenges posed by SMA Type 1. Jesy also used her platform to raise awareness about the disease, sharing the signs for early detection and emphasizing the importance of timely treatment.
Jesy’s Turbulent Pregnancy
Jesy’s pregnancy journey was far from smooth. She announced her pregnancy in January 2025, but it was marred by complications related to Twin-to-Twin Transfusion Syndrome (TTTS). TTTS is a rare condition that occurs in pregnancies where twins share a placenta. Jesy underwent successful surgery to address the TTTS, but the experience was emotionally taxing.
The Birth of the Twins
Jesy’s twins were born prematurely at 31 weeks old. After their birth, they spent four weeks in the Neonatal Intensive Care Unit (NICU). Jesy described the NICU experience as overwhelming and heartbreaking, but she also shared moments of joy and hope as her daughters grew stronger.
Jesy’s Engagement
Amidst the challenges, Jesy found a moment of happiness when her partner, Zion, proposed to her. She announced their engagement on Instagram, sharing a heartwarming photo of the couple on the beach. Jesy expressed her joy and gratitude for having Zion by her side during this difficult time.
For more information on SMA Type 1, you can visit the Cure SMA website.
