Image source (from Hannah Deacon).
Avid followers of the UK’s cannabis legislation movement know Alfie Dingley. Here is a positive update on him: he is now seizure-free and is now learning to ride a bike! Thanks to medical cannabis!
Alfie’s mother, Hannah Deacon, says that her son now has a normal life. “My son is proof that medical cannabis works,” she says.
Six-year-old Alfie has a rare and severe form of epilepsy called PCDH19, caused by a genetic mutation. This condition is characterized by catastrophic clusters of hard-to-control seizures. What’s more, PCDH19 is found to be unresponsive to conventional types of anti-epilepsy medication.
Alfie would have more than a hundred seizures a day, and his personal record is 48 hospital visits in one year. He had been put on a variety of medications since he was diagnosed at eight months old, but nothing had worked.
He was also put on steroids throughout his life, and this made him very aggressive.
In order to prevent any lasting brain damage because of his seizures and to stop pumping steroids into his system before it leads to psychosis, Alfie and his parents flew to the Netherlands in 2017 to seek a cannabis-based treatment. And medical cannabis indeed reduced Alfie’s seizures.
The Dingleys stayed in the Netherlands for five months.
However, for the Dingleys to return home to the UK and still continue Alfie’s cannabis treatment, they had to ask the UK for permission to use the drug.
Cannabis was not legal in the UK, and so the road to obtaining the Home Office’s permission to legally bring Alfie’s cannabis medication to the country had not been easy for the Dingleys. Their request had been initially denied.
Hannah began a high-profile campaign to fight for access to medical cannabis for Alfie. Finally, in June 2018, the government granted them a special license to use the drug. Hannah became the first person in the UK to enter the country with cannabis oil.
Hannah reveals that her son is now seizure-free, is now living a normal life, and is even learning how to ride a bike.
She recalls that previously, Alfie’s epilepsy had been very uncontrollable, so much so that he was in the hospital every week and that he attended only three weeks of school in reception year. According to her, since being able to use cannabis in the UK, Alfie has not set foot in a hospital and he has not had any time off from school.
Just two months ago, the UK government announced that doctors can now legally prescribe medical cannabis to patients who need it starting autumn. In the meantime, they have set up an expert panel to review patients’ cases that have been deemed exceptional.
Other than Alfie, two other kids have been allowed legal access to medical cannabis. One is a 12-year-old boy named Billy Caldwell and the other is a seven-year-old girl named Sophia Gibson. Both also suffer from severe seizures.
Currently, Hannah is helping other families fight for medical cannabis access. She is now heading a campaign group called “End Our Pain,” which is helping 16 families who have not been allowed to apply for cannabis license as they do not have backing from their doctors.
Hannah says that the process that has been set up by the panel in reviewing the cases of patients is deeply flawed. She also describes it unfair, as patients need to have tried medical cannabis abroad.
According to her, not every family is able to afford to go to other countries like the Netherlands and sometimes, the children are too sick to travel. She also finds it unfair that the government will only grant a license to patients as a last resort or only after they have tried all other alternative treatments and medications.
She explains that there are around 20 different drugs for epilepsy, and it is being made compulsory that patients have had tried each one of these drugs. She pointed out that trying four or five of these medications that do not work would already give patients an idea that the rest are not likely to be effective either.
Furthermore, Hannah is criticizing the government for not providing doctors sufficient education regarding the matter. She says that there is a big lack of understanding among those in the medical profession and that she probably knows a lot more about cannabis than most of the doctors in the UK.
According to her, medical cannabis may not necessarily work for everyone, but those who have children who are seriously ill have a right to know and to try whatever treatment that could potentially save their children.