When your kid needs cannabis

When Alfie Dingley’s mother first broached the idea of giving her epileptic son cannabis, their neurologist threatened to call social services.

So she got a new doctor, moved her family to the Netherlands, and found a treatment that worked for Alfie’s seizures, caused by an extremely rare mutation of epilepsy shared by only nine other boys in the entire world.

“He was in hospital every week with hundreds of seizures,” Hannah Deacon explained on The Cannabis Enigma Podcast. After starting the cannabis treatment, Alfie’s seizures became less and less frequent.

“So we carried on and we got up to a dose of 300 milligrams of CBD and we added in a very small amount of pure THC,” she said. “From when he was put back on the product after we came back to England, he had 10 months with no seizures.”

But Alfie’s new treatment was illegal in the United Kingdom, forcing his mother to embark on a public campaign to get her son the only medication that was keeping her son out of the hospital.

After appearing in the media, meeting the prime minister, and engaging in advocacy work, Hannah ultimately got her son the first-ever authorization for an individual patient to use medical cannabis in the UK.

“It’s madness. Initially the government said that there was no medicinal value to cannabis and that they wouldn’t help me,” Hannah recalled. “And then I’m at the Home Office and I met the prime minister and she said, ‘Okay, you can apply for it.'”

Alfie still has a rare form of epilepsy, but with cannabis treatment, his quality of life has improved massively.

“He’s out of hospital and he’s at school most days and he’s learning and he’s happy and I can work,” Hannah said. “Before, I couldn’t do anything. I was a full time [caregiver] watching my child fade away. That’s why I feel so strongly about [cannabis] — it’s about giving people with chronic illness a better quality of life.”

The battle isn’t just Alfie’s, however, which is why Hannah has become an advocate for better and broader access to medical marijuana in the United Kingdom. The legislation in the UK is good, she explained, but doctors are still afraid to prescribe it and buying medical cannabis is cost prohibitive for many of those who do manage to secure a prescription.

“I’m hoping that we’ll move forward,” Hannah said. “We won’t leave it until it is better for people because I know what it’s like to be the parent of a sick child.”

Edited by Michael Schaeffer Omer-Man. Produced by Michael Schaeffer Omer-Man, Elana Goldberg, and Matan Weil. Music by Desca.