Posted by Paul Nelson:-
Who wasn’t moved and inspired by Hannah Deacon on Loose Women cannabis oil story this week?!
It was not the first time we had heard her story. Certainly not the first time the Loose Women cannabis debate has raged on!
It was Loose Women on Tuesday, but she spoke passionately and eloquently on LBC Radio a couple of weeks ago about her six year old son Alfie, his incredibly rare condition and her anguish at not being able to give him cannabis oil legally in the UK to help reduce and ultimately eliminate his seizures.
She has even taken her campaign along with Sir Patrick Stewart, backed by MPs peers and scientists, to Downing Street, delivering a petition with more than 370,000 signatures to back the family’s pleas for a licence to allow Alfie to take cannabis oil in Britain. Doctors’ worries about cannabis research have so far stopped the six-year-old boy from receiving the treatment that his mother believes will transform his life. Those concerns are around cannabis oil containing the chemical THCA which is illegal in the UK.
Cannabis oil is a substance extracted from the cannabis plant by steam distillation. It contains THC which is the psychoactive component in cannabis that give users a high. And that is the sticking point when it comes to governments around the world licensing it. There has been some research into the impact of combining cannabinoids with other cancer treatments, like chemotherapy, but while cannabis is classified as a schedule one drug, that research is limited.
Alfie has a rare form of epilepsy called PCDH19. It usually only affects girls. In fact there are only 9 boys worldwide who have it. Each one of them suffers a different strain, so he is a unique boy with a unique condition. He was having up to 30 fits a day before his parents were able to get hold of cannabis oil in the Netherlands. It was an incredibly frightening time. Even then they were following what Deacon calls “normal protocol”, but Alfie was not getting any better. Intravenous steroids did work in so far as the seizures stopped for a time, but each treatment was an ordeal and there were worries that in the longterm, these could do more damage than good.
“In December 2016 we were in a room with doctors, nurses, me and my partner Drew, and we had five people holding him down trying to get a line into him… and they did it about ten times. He was like a rabid dog, screaming, his eyes coming out of his head and something inside me thought, that is it, I am not doing this anymore” she said.
Deacon was determined to find an alternative treatment to those intravenous steroids that she believes would ultimately make him psychotic. She had “seen a bit online” and it was through one of her support groups for the families and teams close to and affected by PCDH19 that she started reading about cannabis oil and the great results some people in America were having with medicinal cannabis for their children.
She then did what we advise all our CanaXen customers to do: immersed herself in learning about cannabis and its potential medicinal and therapeutic benefits. She asked questions, spoke to parents, quizzed professionals.
“I did lots and lots of research online and it just kept coming up as safe and effective” she said.