Six-year-old Alfie Dingley suffers from a rare kind of epilepsy that causes multiple seizures. The boy experiences up to 30 seizures a day, and at one point, he had 3,000 seizures and 48 visits to the hospital in one year.
Alfie and his parents travelled to the Netherlands in September last year to seek cannabis-based treatment under the care of a pediatric neurologist. While there, the Dingleys saw a dramatic reduction in Alfie’s seizures.
Alfie’s parents have asked the UK government to allow their son to get cannabis legally in the country. However, their request has been denied.
Alfie’s rare medical condition
Alfie is said to have PCDH19, which is a rare and severe form of epilepsy caused by genetic mutation. This condition is characterized by hard-to-control catastrophic clusters of seizures and it is unresponsive to conventional anti-epilepsy medication.
Alfie is also the only person in the UK known to have this condition.
By the time Alfie was four years old, he was suffering from seizures every three weeks. The frequency of these seizures increased to nearly every week in 2016, with multiple fits every time.
When Alfie would suffer a cluster of seizures, he would need an IV of steroids, the amount of which depends on how severe the seizures are. Sometimes, he would get three to five bags of up to 1000mg of steroids.
Improved condition due to cannabis
According to Alfie’s mother, Hannah Deacon, the little boy managed to go a record of 24 days without having a single attack while he was undergoing cannabis treatment in the Netherlands.
It is estimated that with the cannabis medication, Alfie would have only about 20 seizures in a year.
Ms. Deacon had explained that her son was given “whole plant cannabis CBD and THC oil” produced by Bedrocan. According to her, unlike the isolated CBD oil, whole plant cannabis oil gives the patient all the cannabinoids and terpenes that are necessary to get the anti-seizure effect in forms of epilepsy that are hard to control.
She said that before they went abroad, they have tried Hayleighs Hope and Charlotte’s Webb, which are specific strains used for hemp oil products that are now used in many cases of epilepsy. Unfortunately, neither worked for Alfie.
Fundraising and cannabis campaign
Alfie’s parents had been raising funds through their campaign sites (here and here) to go to the Netherlands. The family was forced to return to their home in Kenilworth in Warwickshire because they have no medical insurance in the Dutch country.
They are now campaigning for Alfie to be allowed to use cannabis in the UK, along with other kids who are also suffering from the types of epilepsy that do not respond to conventional pharmaceutical drugs.
And since they also feel that they do not have the luxury of time to wait for the law to change in the UK, their fundraising efforts for Alfie continues as they want to be able to take Alfie back abroad so he could continue with his treatment.
Home Office denies parents’ request
Meanwhile, the Home Office has denied the Dingleys’ request for Alfie to be given license to use medical cannabis oil, saying that “the drug cannot be prescribed, supplied, or administered to the public.”
This is because cannabis is currently listed in the UK as a Schedule 1 substance, and its raw form has not been recognized as having any therapeutic benefit. In other words, cannabis is subject to very strict control restrictions in the country.
The Home Office also added that cannabis can only be used for purposes of research under a Home office-issued license. It said that they would not issue a license to allow the personal consumption of a drug with a Schedule 1 classification.
Currently, Alfie’s seizures can gradually be controlled in hospitals in the UK. However, it is likely that over time, the boy would die prematurely or be institutionalized with psychosis.
Featured image is from Alfie’s Hope Facebook page.