From left, Darla, Aaron and Dan Davison vacation in Denver a few years ago. After they attended a conference in California, Darla learned about medicinal marijuana being used as a treatment for Lennox-Gastaut syndrome, which has given Aaron violent seizures since he was 2 years old. With cannabidiol as part of his current treatment, Aaron has gone from having 50 Grand Mal seizures per month to only two. Submitted photo

Kennedy resident Aaron Davison suffers from Lennox-Gastaut syndrome and used to have as many as 50 major Grand Mal seizures every month. With medicinal marijuana, he has had that number lowered to about two per month by doctors who have discovered this breakthrough in recent years.

Davison’s mother, Darla, has been caring for her son his entire life and dealing with the rare syndrome that causes children to develop epileptic seizures, usually many and of varying types, that last throughout life. Grand Mal seizures are the most problematic as they cause usually violent muscle contractions and sometimes a loss of consciousness.

LGS affects less than 30,000 people in the country, and the Davisons didn’t realize their son had the syndrome specifically until he was a teen. Aaron Davison had his first seizure at the age of 2, and the syndrome hasn’t let up since.

“It’s very treatment-resistant,” Darla Davison said about the disease.

Throughout her son’s childhood and young adult years, Darla Davison and her husband Dan kept trying to find treatment methods that would reduce the amount of seizures Aaron had to go through. From the discomforting vagus nerve stimulation therapy to the nutritionally unsatisfying ketogenic diet, nothing brought the amount of seizures Aaron went through down to any reasonable amount.

“You just keep going round and round through the meds,” said Darla Davison, who remembered a doctor telling her that the right fix for her son would be found once they stumble upon the right cocktail of medications for Aaron.

The severity and amount of Grand Mal seizures troubled the Davison family. With each seizure, there comes an inherent increased risk of injury and death since having seizures while standing or sleeping can lead to a host of other health problems.

Worried about her son’s health, Darla Davison became more active within the LGS community and began communicating with other people with family suffering from the syndrome. She connected with an LGS group on social media and eventually attended a conference in California. At this event years ago, she first heard about cannabis being studied as a future treatment for seizures.

At first, she thought the idea sounded ludicrous.

But she was willing to try what sounded crazy. She found out about two Food and Drug Administration-approved institutions in the country running trials for cannabidiol, a medication formed partially of marijuana extract. Not the part of the plant that gets one high, the oily cannabis substance was already found to be effective for the first test subjects.

The Davison family trekked out to New York City, where one of the institutions is located. Darla Davison said it was a challenge to get a doctor visit amid the myriad of families vying to be a part of early tests.

“We decided we needed to make ourselves known,” she said.

The time spent researching and traveling proved worth it, as the doctor decided Aaron was a suitable candidate for epidiolex, a brand of cannabidiol that could be used to treat seizures along with some secondary medications.

With the secondary medications before epidiolex was administered, Aaron Davison’s number of Grand Mal seizures per month decreased to only 15. With the medical marijuana in his system, they decreased to only two per month. Aaron Davison has been enjoying a much more seizure-free life since successful cannabidiol-fueled treatment began about two years ago.

“We have many people remarking about how Aaron is a different young man,” said Darla Davison, who has noticed her son becoming more outgoing, alert and personable. “That’s what happens when these kids have less seizures: the fog clears.”

Until recently, the Davison family had to travel back and forth to New York City frequently to receive doses of epidiolex, but now the FDA has approved the drug to be distributed in local pharmacies when there is a need. Epidiolex is made available only for those with LGS or Dravet syndromes

“It’s majorly important to reduce seizures,” said Darla Davison, who has become an LGS ambassador for the Jamestown area. She is a member of the LGS Foundation and has helped raise money for research of the syndrome that has no cure. For LGS Awareness Day on Nov. 1, the first day of epilepsy awareness month, a fundraiser at Panera Bread helped raise $200 for the charity.

Darla Davison also creates jewelry such as bracelets and necklaces in support of the foundation. She can be emailed at bracelets@lgsfoundation.org for inquiries about living with LGS or for those who want to help out. She said she enjoys helping families who suffer from LGS and wants them to know they’re “really strong people (who) go through terrible stuff to watch their kids suffer.” With a strong level of support from the LGS community and faith in God, Darla Davison said she and her family were able to overcome their struggles.

“They’re a group of strong people who don’t feel strong,” Darla Davison said.

For those interested in supporting the LGS community and better funding research and treatment, donations can be made at lgsfoundation.org. Donations can also be made at gofundme.com/lgs-mad as these donations will directly show support for the foundation coming from the Jamestown area.