The Mirror has launched a campaign urging an end to preventable paralysis caused by a severe muscle-wasting condition affecting babies. Singer Jesy Nelson shared her distressing experience as her twin babies lost mobility in their legs due to spinal muscular atrophy (SMA) shortly after birth. She emphasized the urgent need for a simple blood test for SMA in newborns to prevent irreversible damage.
Jesy expressed her frustration at the delayed diagnosis of her twins with SMA Type 1, a condition where neurons degenerate rapidly in infancy. Early gene therapies can now prevent paralysis if administered at birth before nerve damage sets in, as Jesy tearfully revealed on ITV’s This Morning. She highlighted the necessity of early intervention to preserve muscle function and prevent further deterioration.
Despite giving birth prematurely to Ocean Jade and Story Monroe Nelson-Foster, Jesy disclosed that her twins are unlikely to walk due to SMA. The lack of routine screening for SMA at birth has resulted in many cases going undiagnosed until significant symptoms are evident, as reported by The Mirror. The call is now being made for a £5 blood test for SMA to be included in newborn screening across the UK to ensure timely treatment and support for affected infants.
The article also mentioned the availability of a groundbreaking gene therapy, Zolgensma, which has shown promise in halting neuron degeneration in SMA patients. However, the absence of newborn screening for SMA remains a critical issue, with Scotland taking the lead in implementing screening protocols. Early diagnosis and intervention are crucial in ensuring better health outcomes and independence for children with SMA, according to Giles Lomax, CEO of SMA UK.
Jesy Nelson’s advocacy for SMA awareness stems from her personal journey, having risen to fame as a member of Little Mix and subsequently pursuing a solo career. Novartis UK Chief Medical Officer emphasized the significance of early SMA diagnosis to prevent long-term disability, urging the government to expand newborn screening nationwide. The article concluded with an invitation for those affected by SMA to share their stories for further awareness and support.