The Mirror has launched a campaign to advocate for the prevention of babies being needlessly paralyzed by a severe muscle-wasting disease. Pop singer Jesy Nelson shared the heartbreaking journey of her twin babies losing mobility in their legs shortly after birth due to spinal muscular atrophy (SMA), emphasizing the absence of a universal newborn blood test for SMA within the NHS.
Jesy, a first-time mother, expressed deep regret at the delayed diagnosis of her babies’ Type 1 SMA, a condition causing rapid neuron degeneration in infancy. She stressed the importance of early gene therapies to prevent irreversible paralysis, underscoring the urgency for immediate treatment upon birth to preserve muscle function.
Following the premature birth of her twins Ocean Jade and Story Monroe Nelson-Foster, Jesy disclosed their grim prognosis of never walking due to SMA. Currently, newborns without a family history of SMA often go undiagnosed until parents notice developmental delays, highlighting the critical need for routine screening.
Recent reports estimate that around 50 infants per week in the UK are born with SMA, with the majority remaining undiagnosed at birth, leading to potential long-term disabilities. The Mirror is urging the government to include a £5 SMA blood test in the standard newborn screening, aligning with practices in other developed countries.
Despite the challenges, Jesy remains hopeful, emphasizing her twins’ resilience and the importance of providing them with positive support and ongoing physiotherapy. The Mirror has been actively raising awareness about SMA, advocating for newborn screening and early intervention to improve outcomes for affected children.
Giles Lomax, CEO of SMA UK, emphasized the life-saving impact of newborn screening and the urgency of early detection in SMA cases. Novartis UK Chief Medical Officer echoed the call for expanded screening, citing the potential benefits of early diagnosis in preventing irreversible damage and enhancing quality of life for affected infants.
For those impacted by SMA, an invitation is extended to share personal stories via email. Jesy Nelson’s advocacy sheds light on the importance of newborn screening for SMA and the need for proactive measures to address this debilitating condition.