Trial epilepsy drug reduces seizures, gives children and their families normal lives


The mother of a seven-year-old boy said โ€œI feel like a millionaire, like Iโ€™ve won the lotteryโ€, 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 Childrenโ€™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 โ€“ moving from experiencing debilitating seizures to learning to speak, read, write independently, make new friends and take part in sport, the hospital said.

A drug trial has transformed young Albie Kellyโ€™s life, his mother Lauren Kelly says. Photo: sheffieldchildrens.nhs.uk
A drug trial has transformed young Albie Kellyโ€™s life, his mother Lauren Kelly says. Photo: sheffieldchildrens.nhs.uk

Albieโ€™s mother, Lauren Kelly, said: โ€œWe rarely left the house out of fear that Albie might have a seizure in a place not easily accessible for an ambulance. I wouldnโ€™t travel out of the area to stay near Sheffield Childrenโ€™s. Since the research trial itโ€™s like I have a new child.โ€

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.

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