“For so long we have been trying to fight for this drug. I think I am in shock, I can’t believe the day is here.”
A baby with a potentially fatal condition has received one of the world’s most expensive drugs after a campaign by his parents.
Eleven-month-old Edward is one of the 65 babies born in England every year with severe spinal muscular atrophy (SMA), which means he lacks a protein vital for muscle development.
He received the new gene therapy Zolgensma, which costs £1.79m, that is shown to help babies breathe without a ventilator, sit up on their own and crawl and walk after a single treatment.
After campaigning for more than a year, his mother Megan said “Edward has got a very bright future ahead of him. He is the perfect baby and he’s a very happy little boy.”
Tap the link in our bio to read more about how this boy’s life has been saved.