Jesy Nelson’s Courageous Battle: Raising SMA Awareness for Her Twin Daughters
Jesy Nelson’s Emotional Journey: Fighting for Her Twin Daughters
Former Little Mix star Jesy Nelson recently shared a heart-wrenching update about her twin daughters on ITV’s This Morning. Known for her powerful vocals and inspiring journey, Jesy opened up about the emotional rollercoaster following her babies’ diagnosis of Spinal Muscular Atrophy (SMA) type one.
The Heartbreaking Diagnosis
Jesy Nelson and her fiancé Zion Foster welcomed their twin girls, Ocean Jade and Story Monroe, prematurely in June 2025. Their world was turned upside down when they received the devastating news of their daughters’ SMA diagnosis. SMA is a rare genetic disease that affects the motor neurons in the spinal cord, leading to muscle weakness and atrophy.
Frustration and a Glimmer of Hope
Speaking to hosts Ben Shephard and Cat Deeley, Jesy expressed her frustration and heartbreak. She revealed that the most challenging aspect of the diagnosis was knowing that a treatment exists that could significantly improve her daughters’ quality of life. Jesy explained that she had noticed signs of SMA in her babies but was initially told not to compare them to other children due to their premature birth.
“It’s frustrating knowing that if this was the hand I was always going to be dealt and there was nothing I could do about it, it would be easier to accept,” Jesy said. “But when you know that there is something that can be done about it, and it is life-changing for your child, that’s the part I cannot accept.”
Raising Awareness and Advocating for Change
Jesy first announced her daughters’ diagnoses on Instagram, where she shared the grim prognosis: without timely treatment, babies with SMA type one have a life expectancy of less than two years. The singer expressed her gratitude for the treatment her girls have received and her determination to raise awareness about SMA.
“I am starting a petition to try and get SMA on the newborn screening heel prick test from birth,” Jesy told her 9.7 million followers. “I am so determined to make this happen. I’m going to fight as much as I can to make this part of the newborn screening.”
The Crucial Role of Early Detection
Early detection of SMA is vital for improving the prognosis and quality of life for affected children. Jesy’s campaign aims to ensure that all newborns are screened for SMA at birth, allowing for early intervention and treatment. This could make a significant difference in the lives of children born with this condition.
Jesy’s story is a poignant reminder of the importance of awareness and early detection in the fight against rare genetic diseases. Her determination to make a change is an inspiration to many, and her advocacy for SMA screening could potentially save countless lives.
How You Can Help
- Learn more about SMA and its impact on children and families.
- Support Jesy’s petition to include SMA in newborn screening tests.
- Share Jesy’s story to raise awareness about SMA and the importance of early detection.
- Consider donating to organizations dedicated to finding a cure for SMA, such as Cure SMA.
The Power of Advocacy
Jesy Nelson’s courageous battle to raise awareness for SMA is a testament to the power of advocacy. By sharing her story and fighting for change, she is making a difference in the lives of countless families affected by this devastating disease. Her determination and strength serve as an inspiration to us all, reminding us of the importance of standing up for what we believe in and fighting for those we love.
