Former Little Mix star Jesy Nelson has shared a heartbreaking new video showing the early symptoms of Spinal Muscular Atrophy (SMA1) in her twin daughters, admitting she feels she 'could have saved their legs' had the condition been detected sooner.
An Emotional Revelation on This Morning
Appearing on ITV's This Morning on Wednesday, an emotional Nelson spoke publicly for the first time since revealing the diagnosis of her eight-month-old twins, Ocean Jade and Story Monroe, on Sunday. The genetic neuromuscular disease causes progressive muscle weakness and wasting due to the loss of motor neurons.
Doctors at London's Great Ormond Street Hospital have advised that because the diagnosis was not made at birth, her daughters 'are probably never going to be able to walk or regain their neck strength' and will be disabled. 'That is the part that frustrates me the most,' Jesy 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.'
The Missed Signs and a Mother's Instinct
Jesy and her partner, Zion, first noticed symptoms like the twins' bowed legs and unusual belly breathing. However, they were reassured by health visitors and GPs that, as premature babies, they might simply be delayed in reaching milestones. 'I did say to my mum, "Isn't their belly an unusual shape? They breathe from their belly,"' Jesy recalled from their time in the Neonatal Intensive Care Unit (NICU).
It was ultimately Jesy's mother, Janice, who persistently pointed out that something was wrong with the babies' leg movements. 'It's alarming when you have healthcare visitors coming round and saying they're absolutely fine... and it took for my mum to say "they don't move their legs the way they should be moving,"' Jesy explained. She described watching her daughters move their legs less and less until the movement stopped entirely within their first month.
A Fight for Change and Newborn Screening
The crux of Jesy'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 treatment develop with minimal or no symptoms. 'When you know there is something that can be done about it and it is life-changing to your child, that's the bit that I cannot accept,' she said, breaking down in tears.
Now, the singer is channelling her grief into action. She has revealed she has started a petition to get newborn babies screened for SMA from birth in the UK. 'I am determined and ready to fight,' she stated, emphasising the vital importance of early detection. 'All I can do is try my best and make change.' She poignantly added that while she wants to just be their mum, the situation has forced her into a nursing role for her children.
