THE fathers of a severely epileptic boy have said they are tired of waiting for medication to help stop him from having up to 30 seizures a day.
Michael and Paul Atwal-Brice have avidly campaigned for their 13-year-old identical twins Levi and Lucas - who both suffer from epilepsy and are autistic - to have access to cannabis-based medication Epidiolex.
Their campaigning hit a breakthrough last month when they found out that Levi would be getting access to the treatment.
However, his twin Lucas, would not get access to it due to his epilepsy seizures not being as severe as Levi’s.
But neither child is yet benefiting from the drug as they are still waiting for Levi to actually receive it.
The distraught dads have now been waiting for seven weeks since they were told Levi could have it - with no news on what is happening next.
Michael said that at the moment Levi’s other medication has been upped to help him cope with his seizures, but nothing seems to be helping.
“We’re hoping something gets sorted out soon,” said Michael.
“We keep asking Sheffield Children’s Hospital what’s happening and we’re told they’re waiting on it.
“We feel like we’re being fobbed off every time we ask and we just want to know when it’ll be available for Levi.
“His seizures are really affecting him, the increase of his current medication is helping control the seizures.
“We are having to pick him up from school because he has had a bad seizure so his education is suffering.
“Levi’s other friends who have epilepsy across the country have got access to Epidiolex so we can’t understand why we don’t have it.”
Epidiolex 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.
Both Michael and Paul say they will continue to campaign to get Lucas access to Epidiolex.
Speaking to the Chronicle back in April, Michael said: “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.
