The Mirror has initiated a campaign today to advocate for the prevention of babies from being needlessly paralyzed by a severe muscle-wasting illness.
Jesy Nelson, a popular singer, shared the heartbreaking story of her twin babies who experienced a loss of leg function shortly after birth due to spinal muscular atrophy (SMA). She emphasized the lack of a standard blood test for SMA in newborns within the NHS.
Highlighting the urgency of early intervention, Jesy expressed her distress over the delayed diagnosis of her twins with Type 1 SMA. She underscored the importance of gene therapies that can potentially prevent paralysis if administered promptly after birth.
Despite the challenges, Jesy remains hopeful and determined to support her twins through their journey. The lack of newborn screening for SMA in the UK has raised concerns, with an estimated 50 babies born weekly with undiagnosed SMA.
The Mirror is calling on the government to include a £5 SMA blood test in the standard newborn screening, a practice already adopted in many developed nations. Early diagnosis can significantly impact a child’s quality of life and independence.
As efforts continue to raise awareness and push for newborn screening, Jesy’s story sheds light on the importance of early detection and intervention for SMA. The call for expanded screening aligns with global practices to ensure babies have the best chance at a healthy life.
For those impacted by SMA, sharing personal stories and experiences can help raise awareness and support ongoing advocacy efforts.