The family has moved to the Netherlands to become medical marijuana refugees.
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The government of the United Kingdom is denying a six-year-old with a rare form of epilepsy a license to treat his condition with cannabis oil, which evidence suggests can successfully reduce seizures among pediatric patients.
The six-year-old, Alfie Dingley, is from Kenilworth, Warwickshire, but is now moving to the Netherlands with his family, where he can access cannabis oil to treat his condition.
While Dingley’s physicians in the UK originally prescribed him steroids, this medication could cause long-term health problems for the young boy, including future organ failure. Looking for a safer alternative, Dingley’s mother, Hannah Deacon, took her son to the Netherlands in September, where they were first able to try cannabis oil as a treatment for Dingley’s epilepsy.
While Dingley previously experienced up to 30 seizures per day, according to his mother, the cannabis oil successfully reduced the number of seizures her son experienced, as well as their severity. In fact, while in the Netherlands, Dingley reportedly went 24 days without a seizure.
Studies examining the ability of cannabis-based medicines to treat various forms of childhood epilepsy have shown promising results. In one large-scale 2017 clinical trial, researchers found that participants with a rare form of childhood epilepsy saw their monthly seizures drop from 12.4 to 5.9 with the help of CBD. Another 2016 study of CBD-enriched medical cannabis as a treatment for childhood epilepsy similarly found that the medication significantly reduced pediatric patients’ seizures. This study also found that CBD-enriched medical cannabis led to improvements in these patients’ behavior, language skills, and motor skills, among other benefits.
Physicians are yet to establish the exact type of epilepsy that Dingley is afflicted with, though his mother tells the BBC, ”It’s very rare and very aggressive, there’s only nine boys in the world with Alfie’s condition.”
Recently, other high-profile cases have similarly illustrated the power of cannabis-based medicines for treating childhood epilepsy and other conditions that cause seizures.
In the United States, the parents of seven-year-old Jagger Cotte use cannabis oil to treat their son’s Leigh’s Disease and seizures. With the help of cannabis oil, Cotte suffers roughly three times fewer seizures and has remained alive for nearly double the length of time that doctors had predicted.
Haleigh Cox, a little girl with Lennox Gastaux Syndrome, began taking cannabis oil at only four-years-old, successfully alleviating her daily seizures. The brand of cannabis oil that Cox uses has since been named “Haleigh’s hope” in her honor. And another young girl from the United States, 12-year-old Alexis Bortell, who uses Haleigh’s Hope to treat her epileptic seizures, has now been seizure free for two years. Like Alfie, Alexis’ family had to move, from Texas to Colorado, so she could access Haleigh’s Hope.
In 2016, a similar case made headlines in the UK after a Northern Irish mother discovered that CBD oil could be used to treat her son Billy’s intractable and statue epilepsy. The CBD oil provided Billy with relief from his seizures, unparalleled with any other medication he had tried. At only 11-years old, Billy became the UK’s first medical marijuana patient.
But in Dingley’s case, the UK’s Home Office (HO), the ministerial department of government charged with regulating drug policy, has barred the prescription of Dingley’s cannabis-based medication within the country. This has left Dingley and his family with few other options besides moving to a more cannabis-friendly country, or falling back on the more dangerous medications he had originally been prescribed.
The UK’s All-Party Parliamentary Groups (APPGs), a group of informal political groups run by the Members of the Commons and Lords, but which have no official status in Parliament, have advocated for Dingley’s use of cannabis oil. Still, despite widespread support among lawmakers and public officials, the Home Office refuses to budge.
Deacon is currently raising money to lobby the government in the hopes of convincing the Home Office to allow her and her family to return home from the Netherlands—this time with the option to legally treat her son’s rare condition with cannabis oil.