An eleven-month-old baby in the United Kingdom with a fatal condition has received the world’s most expensive drug which costs £1.79m. The baby, identified as Edward, from Colchester in Essex, has severe spinal muscular atrophy (SMA) a genetic disease that causes the muscles to become weak and waste away. He received the new gene therapy […]
An eleven-month-old baby in the United Kingdom with a fatal condition has received the world’s most expensive drug which costs £1.79m.The baby, identified as Edward, from Colchester in Essex, has severe spinal muscular atrophy a genetic disease that causes the muscles to become weak and waste away.
Edward’s mother Megan Willis said it was “incredible” and she was “so excited and relieved”. She said she was so thankful her son had been granted the drug, which contains a replica of the missing gene SMN1.The family previously said they felt abandoned in their “race against time” for Edward to receive the drug, which must be given as early as possible.
“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,” she said.
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