Former Little Mix singer Jesy Nelson has launched a heartfelt campaign to change UK health policy, calling for all newborn babies to be screened for a severe genetic condition after her own twin daughters received a life-altering diagnosis.
A Mother's Heartbreaking Revelation
In an emotional video shared from hospital on Sunday, the 34-year-old star revealed that her eight-month-old daughters, Ocean Jade and Story Monroe, have been diagnosed with Spinal Muscular Atrophy (SMA) Type 1. Jesy described the past three to four months as "the most gruelling" of her life.
Fighting back tears, she explained that SMA is a progressive neuromuscular disease that attacks motor neurons, leading to severe muscle weakness and wasting. "It affects every muscle in the body down to legs, arms, breathing and swallowing," Jesy stated. "Essentially what it does over time is it kills the muscles in the body."
The Critical Window for Treatment
The devastating aspect of the diagnosis is the missed opportunity for early intervention. Medical experts confirm that if SMA1 is treated pre-symptomatically, at or near birth, the progression of the disease can be largely prevented. Many children who receive treatment immediately develop with minimal or no symptoms.
Currently, SMA is not part of the standard newborn heel prick test offered in the UK, which screens for several other rare but serious conditions. This means diagnoses often come only after symptoms appear, when irreversible damage may already have occurred.
Launching a Determined Campaign for Change
Driven by her family's experience, Jesy Nelson has now taken decisive action. She announced she has started a petition to get SMA added to the newborn screening programme. "I just need you to know that I am so determined to make this happen," she told her followers. "I am going to fight as much as I can to make this part of the newborn screening."
She expressed overwhelming gratitude for the public support following her initial announcement, stating she was genuinely moved by the "outpour of support and beautiful messages" for her family and others facing similar battles.
The singer confirmed the matter is currently under review by health authorities and promised to keep her supporters updated on the campaign's progress. She also revealed she will be discussing her daughters' condition on ITV's This Morning to raise further awareness.
"We have a long way to go," Jesy acknowledged, signing off with a message of love and thanks to her fans for their solidarity in what promises to be a challenging journey ahead for her young family.
