Former Little Mix star Jesy Nelson has delivered an emotional and urgent plea for change after revealing her eight-month-old twin daughters have been diagnosed with a severe genetic condition.
The Devastating Diagnosis
Appearing on ITV's This Morning on Wednesday, Nelson shared that her twins, Ocean Jade and Story Monroe, have Spinal Muscular Atrophy Type 1 (SMA1). The genetic neuromuscular disease causes progressive muscle weakness and wasting due to the loss of motor neurons. Doctors from Great Ormond Street Hospital have advised that, because the diagnosis was not made at birth, the girls are likely never to walk or regain full neck strength.
"That is the part that frustrates me the most," an emotional Nelson told hosts Ben Shephard and Cat Deeley. "I knew and saw all of the signs before I knew what SMA was. I potentially could have saved their legs. I don't think I'll ever be able to get over or accept it."
Missed Early Symptoms
Nelson and her partner, Zion, first noticed symptoms such as the twins' bowed 'frog' legs and unusual belly breathing. However, they were repeatedly reassured by health visitors and GPs that, as premature babies, the twins might simply be delayed in reaching milestones.
"It was my mum Janice who first pointed out something was wrong," Jesy explained. She admitted it was "alarming" when healthcare professionals said the babies were fine, only for her mother to observe, "they don't move their legs the way they should be moving." Nelson initially dismissed it as her mother being a "worrier," but soon noticed the leg movements decreasing until they stopped altogether.
She played a poignant video from the twins' first month, showing the rapid loss of leg movement. "That's how quick it is," she said, her voice breaking. "That is why it's so important and vital to get treatment from birth."
A Fight for Newborn Screening
The crux of Nelson's anguish lies in the fact that if SMA1 is treated pre-symptomatically, at or near birth, the disease can be largely prevented. Many children who receive early intervention develop with minimal or no symptoms.
"When you know there is something that can be done about it and it is life-changing for your child, that's the bit that I cannot accept," she stated.
Now, the singer is channelling her pain into action. She has launched a petition to make newborn screening for SMA standard in the UK. "All I can do is try my best and make change," she declared, stating she is "determined and ready to fight" for the policy to be approved.
Breaking down during the interview, she was comforted by Cat Deeley as she confessed, "I just want to be their mum, I don't want to be a nurse." Her powerful interview underscores a critical gap in UK healthcare and a mother's resolve to ensure other families avoid the same heartbreak.
