A SEVERELY epileptic twin in Barnsley is one of just seven people in Yorkshire and the Humber that will receive cannabis-based medication but his identical brother - who also has the condition - will not.
Levi and Lucas Atwal-Brice are 12-year-old identical brothers who suffer from epilepsy - having up to 20 seizures a day - and severe autism.
Their parents, Michael and Paul Atwal-Brice, have been campaigning for the boys to have access to cannabis-based medication Epidiolex.
The medication was released in the UK last year to help people with epilepsy and contains a highly purified cannabidiol (CBD) that is extracted from the cannabis plant.
Michael and Paul, of Thurnscoe, recently received the news that Levi has been given a prescription of the drug - but Lucas will not have access to it.
“We are upset obviously but was also thrilled Levi had been given the opportunity, it was very bitter sweet news,” Michael said. “We are hoping good news will come for Lucas very soon.
“Levi has the most severe life-threatening epilepsy, although Lucas does still have uncontrollable life-threatening epilepsy, it was a points system and he didn’t make it to the final seven in our entire region.
“It is our understanding Levi is the only child in Barnsley that has been given a prescription of Epidiolex. He will need regular blood tests to check he’s tolerating it and it’s working with his other medications.
“It was only last week we couldn’t get Levi’s epilepsy under control and had to call 999 and have an ambulance out. This resulted in Levi being in A and E and having to be cannulated and given other rescue medications to break the cycle of seizures. This is distressing and upsetting for the boys with their severe autism, and costly to the NHS.”
Michael and Paul said the news is good but also a bit of a disappointment, but they are hoping that Lucas will soon be able to access Epidiolex too.
“We are hoping the Epidiolex will work really well for Levi and improve his quality of life dramatically. He has been on several anti-epileptic medications which have had many side effects from loss of appetite, weight loss, dizziness, confusion and behavioural problems to name a few.
“The boys have suffered with many of these over the years. Our dream is for the boys to ideally be on just Epidiolex but realistically due to the severity of their epilepsy it may be this one plus another anti-epilepsy drug, or a combination of CBD and THC cannabis but again this is a tricky fight as THC is not widely used.”
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.
Both Michael and Paul say they will continue to campaign to get Lucas access to Epidiolex as well.
