The Mirror has initiated a campaign to advocate against infants being needlessly paralyzed by a severe muscle-wasting disease. Jesy Nelson, a popular singer, revealed how her twin babies lost mobility in their legs shortly after birth due to spinal muscular atrophy (SMA) but were not diagnosed promptly. She emphasized the absence of a standard blood test for SMA in newborns within the NHS.
Jesy, a first-time mother, expressed regret over the delayed diagnosis of her twins with SMA Type 1, leading to irreversible nerve cell loss in their early weeks. She highlighted the importance of gene therapies that can prevent paralysis if administered immediately after birth. Jesy’s emotional plea on ITV’s This Morning underscored the urgency of early intervention to preserve muscle function in affected newborns.
Despite giving birth prematurely to Ocean Jade and Story Monroe Nelson-Foster in May, Jesy and her fiancé were informed that their twins might never walk due to SMA. The lack of routine SMA screening at birth in the UK has resulted in numerous infants being diagnosed late, leading to severe consequences.
The Mirror’s investigation in 2024 disclosed that around 50 UK babies each week are born with SMA, with the majority remaining undiagnosed at birth. The Mirror is urging the government to include a simple £5 blood test for SMA in the standard newborn screening, as other developed nations have done, to ensure early detection and treatment.
Jesy remains optimistic about her twins’ future despite the challenges they face, emphasizing the importance of positivity and ongoing physiotherapy. The Mirror has been at the forefront of raising awareness about SMA and the need for newborn screening since 2021, advocating for early diagnosis and access to life-changing treatments.
Giles Lomax, CEO of SMA UK, emphasized the life-saving benefits of newborn screening for SMA, stressing that early diagnosis is crucial for better health outcomes. Novartis UK’s Chief Medical Officer echoed the call for expanded SMA screening across the UK to align with European standards.
Jesy Nelson’s public disclosure of her children’s SMA diagnosis has shed light on the urgency of newborn screening for SMA and the potential life-altering impact of early intervention. The campaign for widespread SMA screening aims to provide infants with a fighting chance against the debilitating effects of this devastating condition.
