We have heard of Billy Caldwell, Alfie Dingley, Ava Barry, and Michael O’Neill. All of them, together with their families, are fighting for their government’s approval to use medical cannabis in order to treat severe seizures.
But there are stories of more children in Europe who are seeking legal access to cannabis so they could live normal lives.
Here are names you may have had encountered in cannabis news:
Sophia Gibson, 7 years old (Northern Ireland)
Seven-year-old Sophia Gibson from Northern Ireland suffers from an extreme form of epilepsy called Dravet Sydrome, which causes frequent fits. Her parents, Darren and Danielle, have applied for a license to use cannabis oil in the treatment of her condition.
According to the Gibsons, cannabis oil relieves their daughter’s symptoms. They have previously taken Sophia to the Netherlands and she had been treated with the medication.
However, the Home Office is still reviewing the issue and, despite stressing out the urgency of the situation, the Gibsons have yet to hear from them.
As a result of what Danielle describes as ” too much stalling” by the government, Sophia suffered a really bad seizure and has been put into an induced coma. The girl is now in the Royal Victoria Hospital’s intensive care.
Danielle says that they need the Home Office to decide on the matter of medical cannabis as soon as possible as Sophia does not have much time.
Charlie Jones, 6 years old (UK)
Charlie Jones (center) with parents, Kerry and Emma Jones
Charlie Jones has Non-Ketotic Hyperglycinemia, a very rare genetic disorder that leads to abnormally high levels of glycine and causes serious health problems. The condition has affected his brain and his other organs, and he suffers from seizures every day. In fact, he can have up to 80 seizures in one day, including cluster seizures, which can be as many as 30 seizures in just five minutes.
For years, Charlie’s grandfather, Ian Gilmore, had been trying to get him cannabis oil as he thinks that it could reduce the boy’s seizures. However, Gilmore said that his family could not wait for months to get the medication.
According to Gilmore, Charlie’s cluster seizures are becoming more frequent, and this is the reason why they urgently need to be able to give him the cannabis oil.
Gilmore said that their cannabis license application was with their consultant and, if they were not willing to fill it in, they need to go to another consultant. But because they worry that Charlie might die, they are willing to take alternative measures if they don’t win approval.
The family is thinking about going to a laboratory in Amsterdam where they could avail of cannabis oil.
According to Gilmore, they first contacted the Home Office in 2014, but to no avail. It was only two months ago when they were informed that they need a consultant to fill in their cannabis license application.
Murray Gray, 5 years old (Scotland)
Murray Gray and mum, Karen
Five-year-old Murray has a rare form of epilepsy called Myoclonic astatic epilepsy and suffers up to 12 seizures a day.
Murray’s mother, Karen, said that she felt like she hit a brick wall in trying to convince authorities to allow the boy access to cannabidiol (CBD). She and Murray had to fly to the Netherlands to get the medication because, according to her, she could not wait for the UK government to make it available.
The good news is that Murray’s neurologist at the Royal Hospital for Sick Children revealed that they can now prescribe Epidiolex for the boy. Epidiolex is a new cannabis-based pharmaceutical drug designed to treat symptoms of certain types of epilepsy.
It looks like Murray will be the first child in Scotland to be given Epidiolex.
Karen said that she is very happy about the news. While Epidiolex is not exactly the product they had wanted, she said that she is still happy that the drug is now available at Edinburgh and she could not wait to come home.
Only time will tell, though, if Epidiolex can help reduce Murray’s seizures.