'I used to be terrified to put Albie to bed... now, with epilepsy drug, it's like we've won the lottery'

A PIONEERING clinical trial has transformed the lives of two youngsters with a severe and potentially fatal form of epilepsy.

- By Dave Higgens

Seven-year-olds Albie Kelly and Freddie Truelove have gone from debilitating seizures to learning to speak, read, write independently, make new friends and take part in sports.

Both have Dravet syndrome, which often begins before the age of one and affects around one in every 15,000 babies.

It is associated with severe refractory epilepsy, nervous system problems and a possible early death for sufferers.

Fear

But the families of Albie, Freddie and other youngsters taking part in the research trial at Sheffield Children’s Hospital have seen amazing changes after their children received a new drug, Zorevunersen.

Albie’s mother, Lauren Kelly declared: “It’s been life-changing. I feel like a millionaire, like I’ve won the lottery.

“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 Hospital.

“But since the research trial, it’s like I have a new child.”

Albie, who lives with Lauren and his dad and sister in Barnsley, South Yorkshire, received the first dose of Zorevunersen in June 2022.