Edward, a five-year-old from Colchester, is one of the first UK children to receive the gene therapy Zolgensma for spinal muscular atrophy (SMA), which costs £1.79 million. His mother, Megan, reported that he has made “incredible progress,” now able to walk independently and display a vibrant personality. SMA typically leads to severe muscle weakness, but thanks to timely intervention, Edward has transitioned from being a lethargic infant to an energetic child who can walk 20-30 steps, swim, and enjoy activities like jet skiing.
Despite needing ongoing support, including a potential wheelchair for life, his family is proud of his achievements. After moving to London for intensive physical therapy and fundraising £170,000, they have seen notable improvements. Edward also started school, making friends and participating like any typical five-year-old.
Professor James Palmer of NHS England praised the benefits of Zolgensma, noting that over 150 children with SMA have similarly thrived post-treatment. While Edward will still require additional medication, there’s hope that other SMA patients will experience improved quality of life and potentially reach adulthood, thanks to new medical advancements.
Source link
