Rock climbing. Archery. Dancing in the dining hall. Activities any camper would experience at a summer camp. At Camp Candlelight in Prescott, Arizona, campers have another experience in common as well: epilepsy.
Eleven-year old Mercedes Gonzales of Mesa, Arizona, attended the camp, sponsored by the Epilepsy Foundation of Arizona, for the first time this year. She also became the first child to openly use cannabis oil as treatment for her seizures while attending the summer camp, according to Stephanie Powell of Harvest of Tempe, a medical marijuana dispensary.
Powell, who is legally able to give the medical marijuana to Mercedes, said Mercedes was “quiet and excited” about her first day at camp, but that Mercedes opened up with time.
“She was always the first to volunteer to be a leader or the first to try an activity,” Powell said of Mercedes in an email correspondence. “She gave her all in everything that she did. She is truly inspiring.”
Mercedes was first diagnosed with epilepsy when she was 3 years old.
She has tried 23 anti-epileptic drugs and also had a Vagus Nerve Stimulator (a pacemaker-like device that sends pulses of electricity to prevent or halt seizures) installed. But the seizures continued.
“She was a total zombie. She was so drugged out she could not stay awake,” said Yolanda Daniels, Mercedes’ grandmother and legal guardian. “There were some that made her hallucinate. One put her in the ICU for awhile.”
Daniels started researching medical marijuana and found a parent support network through Harvesting Hope, a nonprofit that specializes in helping children with pediatric epilepsy and partners with Harvest of Tempe, that helped her apply for a medical marijuana card for Mercedes.
Daniels estimated that Mercedes was having about 30 seizures a month at the time. After starting treatment with cannabidiol oil, Mercedes went for a month without a seizure. Mercedes currently takes two drugs and flower CBD, the crystal-covered buds of the marijuana plant that are dried and used as a medication, which she has been doing for a year.
Daniels said that Mercedes’ seizures are reduced and that she has started to express her emotions and make progress in school. Last year, Mercedes mastered the goals on her Individualized Education Plan.
“Her teachers are amazed,” Daniels said. “Since she started the CBD, her social skills have gone up. She’s made friends at school, she talks to people, she wants to socialize. She wouldn’t have done that a year ago.”
Mercedes also takes a nightly syringe of CBD oil that includes 1 milligram of THC, but Daniels said the treatment doesn’t make Mercedes high.
“She starts to get tired because it relaxes her body,” Daniels said. “But she can have a conversation with you, watch a movie, read a book. She can function. It’s not harming her in any way.”
Daniels said every child should have the opportunities Mercedes had at Camp Candlelight.
“I wanted other parents to know that it was OK for their kids to take this there,” Daniels said. “That was my whole reasoning in letting Mercedes go. I think she should be able to experience life just as well as anybody else.”
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