The Mirror has initiated a campaign to advocate for the prevention of newborns from suffering from a debilitating muscle-wasting disease that leads to paralysis. Pop artist Jesy Nelson shared the distressing experience of her twin babies losing mobility in their legs soon after birth due to a delayed diagnosis of spinal muscular atrophy (SMA). She highlighted the absence of a standard blood test for SMA in newborns within the NHS.
Emphasizing the urgency, Jesy expressed regret that early intervention could have saved her twins from the severe Type 1 SMA, where nerve cells degenerate rapidly in infancy. She stressed the significance of gene therapies that can avert paralysis if administered promptly at birth. Jesy’s emotional account on ITV’s This Morning underscored the need for early detection to prevent irreversible muscle damage.
Despite giving birth prematurely to twins affected by SMA, Jesy and her fiancé have been informed that their children may never walk due to the condition. The lack of routine screening for SMA in newborns has resulted in a high number of undiagnosed cases in the UK, with many infants facing the risk of wheelchair-bound lives.
The Mirror’s persistent advocacy for SMA awareness dates back to 2021, when the potential cure of Zolgensma was introduced within the NHS. However, the absence of newborn screening for SMA continues to be a pressing issue. Immediate implementation of a £5 blood test for SMA in the standard newborn heel prick examination is urged to ensure early detection and timely treatment, as seen in other developed countries.
Jesy’s personal journey has shed light on the importance of newborn screening for SMA, prompting pharmaceutical companies like Novartis to support expanding screening programs nationwide. The call for newborn screening is crucial for diagnosing SMA before symptoms manifest, offering infants a chance at a healthier future without disability.
As Jesy shares her family’s experience with SMA, the conversation around early detection and treatment intensifies, urging the Government to align with European standards in SMA screening at birth. Families impacted by SMA are encouraged to share their stories to raise further awareness and support for improved screening practices.