The mother of a seven-year-old boy said “I feel like a millionaire, like I’ve won the lottery”, after a pioneering clinical trial transformed the life of her son, who has a severe form of epilepsy.
Albie Kelly and Freddie Truelove, both seven, are two of the children who have been given a new lease on life following the research trial at Sheffield Children’s Hospital in the UK.
Both boys have Dravet syndrome, a form of epilepsy which often begins before the age of one, and affects about one in every 15,000 babies born.
Youngsters taking part in the trial have seen dramatic changes – moving from experiencing debilitating seizures to learning to speak, read, write independently, make new friends and take part in sport, the hospital said.
Albie’s mother, Lauren Kelly, said: “We rarely left the house out of fear that Albie might have a seizure in a place not easily accessible for an ambulance. I wouldn’t travel out of the area to stay near Sheffield Children’s. Since the research trial it’s like I have a new child.”
Albie, who lives with his mother, father and sister in Barnsley, South Yorkshire, received the first dose of the trial drug zorevunersen, previously known as STK-001, in June 2022.