Written by ‘He deserves to have a wonderful life full of joy, not the pain he currently faces,’ say his parents after the U.K. Government turned down the request
A mother and father of a 6-year-old boy are in serious distress. A child’s life is on the line. Yet another government is more concerned with antiquated law that doesn’t serve its citizens than it is with the truth no government seems to want to expose regarding Cannabis – it’s medicine! Alfie, who by far is not alone in the need for the whole plant, has a rare form of epilepsy that’s dramatically improved after using Cannabis. But the family has been denied a request for a medical cannabis license by the Government.
Alfie Dingley, from Kenilworth in Warwickshire, has childhood epilepsy (PCDH19) that causes multiple seizures. This type of severe Intractable epilepsy makes an individual much more susceptible to SUDEP – Sudden Unexplained Death in Epilepsy Patients which in America takes the lives of over 50,000 people per year. Allowing him Cannabis to stop the seizures is imperative. Keeping an upright image of a nation that doesn’t need THC is not.
In California, we’ve faced serious changes with new regulations in place. As much as it seems to be ‘so much harder for everyone here as I’ve expressed in previous blogs, it’s stories like this one that opens my eyes and makes me feel so fortunate. Genevieve seized at a minimum of 25 or more times daily. Due to the ease of access thanks to Dennis Peron (RIP Legend) and the Prop 215 team, treating her was simple.
Providing compassion oils and then taking over her care as ‘Daddy’ sometimes has been challenging but nowhere near the challenge that parents and patients face daily in nations across the globe. From the many African and European countries that are hoping for legalization to the land down under, it seems everyone knows what medicine they need and faces barriers to gaining safe access. In Australia, that fight has been so well documented. Even in America, many don’t realize that a zip code determines access. How can it be constitutional to allow one resident of a country to perish to cancer, seizures, on and on – while allowing another safe access to cannabis and to heal?
On to more specifics on this story:
Alfie experiences up to 30 seizures a day and had a scary 3,000+ recorded in 48 hospital visits that occurred in just a year. The young boy’s seizures considerably reduced when he traveled to the Netherlands to take a cannabis-based medication prescribed by a pediatric neurologist last September.
It is estimated that with the Dutch cannabis medication Alfie would have about 20 seizures a year. But the Home Office has denied the family’s request for medical cannabis oil, which remains illegal in the UK. It said the drug “cannot be practically prescribed, administered or supplied to the public”.
Alfie’s mother, Hannah Deacon, said while her son was abroad he managed to go 24 days without suffering a single attack. “You’ve got to fight for your kids, I want to know that I’ve done everything I can,” she told the BBC, “It’s very rare and very aggressive, there are only nine boys in the world with Alfie’s condition,” she added.
“We never imagined how well it would work. He’s just a six-year-old boy, he deserves a happy life. We’ve found something that makes him happy and now we’ve got to take that away.”
She said his cannabis dose was “very small” and he was taking just three drops of the oil. In stark contrast, the volume of steroids he is currently needing to treat his condition can sooner or later lead to organ failure, psychosis, and even death, according to Alfie’s mother.
Members of the all-party parliamentary group on drug policy reform have urged the Government to help Alfie’s struggle.
Writing on their campaign website Alfie’s Hope, the parents said they were fundraising for their son to go abroad to take the treatment. The family was forced to return home from the Netherlands because they did not have medical insurance in the country.
“We are also fundraising to enable us to take Alfie abroad to give him the treatment we believe will help him as it is currently still illegal in this country. We feel unable to wait until the law is changed in the UK.
“We want our baby back, we want to give Alfie the chance of a happy life which he massively deserves. He’s been through more than most go through in a lifetime. He deserves to have a wonderful life full of joy, not the pain he currently faces.”
All of Alfie’s seizures require hospitalization and treatment with drugs. He is believed to be the only boy in Britain with the rare PCDH19 form of epilepsy.
“Often, when Alfie has a seizure he stops breathing. Although this rights itself naturally quite quickly, it is very frightening,” reads a statement on the site. “The seconds when he is not breathing can feel like a lifetime. His family lives with the fear of their beloved boy dying every week.”
The Home Office said it acknowledged that individuals with chronic pain and debilitating illnesses are “looking to alleviate their symptoms”.
“However, it is important that medicines are thoroughly tested to ensure they meet rigorous standards before being placed on the market so that doctors and patients are assured of their efficacy, quality, and safety,” a spokesperson added.
“Cannabis is listed as a Schedule 1 drug, as in its raw form it is not recognized in the UK as having any medicinal benefit – and is therefore subject to strict control restrictions.
“This means it cannot be practically prescribed, administered, or supplied to the public in the UK, and can only be used for research under a Home Office license. The Home Office would not issue a license to enable the personal consumption of a Schedule 1 drug.”
And once again a child is denied. This is happening way too often in nations across the globe. Finally in America we just saw as young Alexis faced off with our Attorney General Jeff Sessions in court, suing the top dog in law in America for the many violations of civil rights within prohibition, the CSA, and possibly the ADA. In America the fight is on against prohibition. One of the biggest problems for other nations is that the U.S. was the country to come forward in 1970 and pair Cannabis up with the likes of Hallucinogenic drugs and Heroin under schedule one while allowing destructive and addictive cocaine and methamphetamine to be under schedule two. What many have yet to understand is that until leaders of other nations uncover the fact that Cannabis Prohibition and the CSA both were done without moral or merit, we’ll continue to see stories like this.
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