THE parents of a severely epileptic boy who is the only child in Barnsley on a cannabis-based drug have said it has made a ‘massive improvement to his life’.
Levi Atwal-Brice, 13, has Lennox Gastaut syndrome, a rare type of epilepsy.
He and his twin Lucas have had epilepsy for most of their lives, but earlier this year, Levi was given access to medication called Epidiolex.
Epidiolex was released in the UK last year to help people with the condition and it contains a highly purified cannabidiol (CBD) that is extracted from the cannabis plant.
CBD is a chemical substance found in cannabis that has medical benefits.
Levi was one of just seven people in Yorkshire and the Humber to receive the medication, but his brother Lucas will not get access, as his form of epilepsy isn’t as rare.
The twins’ parents, Michael and Paul Atwal-Brice, of Thurnscoe, have expressed their disappointment in Lucas not being able to access Epidiolex.
They said they have seen a big difference in Levi, who had frequent trips to hospital before he was given the drug around four months ago.
“He has been doing really well with it,” said Michael.
“Now the medication has been approved but it’s only for people with two really rare conditions - Lennox Gastaut syndrome and Dravet syndrome.
“He seems a lot better now. He was hospitalised in Scarborough in the summer and he hasn’t been
hospitalised since. We haven’t had as many phone calls from the school as we have done in the past.
“The boys have suffered with many side effects from medication over the years.
“Levi has some side effects from the Epidiolex, but he has better access to his education now, as he isn’t having to come home or go into hospital, so that has improved too. He is not having as many seizures.”
Levi and Lucas were diagnosed with autism, then epilepsy, at the age of three and have been on various medications for their epilepsy ever since.
Levi is currently on five different medications for his epilepsy and Lucas on three.
Michael and Paul say they hope the rules on Epidiolex will change and Lucas will also be able to take the drug to help control the condition, but they also want to look into other medication.
“It’s one our friends have had for their children,” said Michael.
“They have said it’s fantastic and it is something we want to know more about and try, but they have to pay for their prescription whereas the Epidiolex we have for Levi is free. We recently picked up two more bottles from Sheffield Children’s Hospital for Levi, but it’s £1,000 per 100ml, which is insane.
“Luckily for now it is free to us and is funded by a company, but we don’t know how it will be funded when it goes to the NHS.”
