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“I’m a winner,” says 11-year old Branden Petro, who likes to carry around his trophies. There is a trophy for soccer, one for baseball, another for karate. But unlike most kids his age, Branden didn’t win his trophies at school – his parents went to a trophy shop and bought them for him when they realized that Branden needed to feel special even though he cannot participate in sports any more. Branden is fighting a bigger battle, the one engraved on the trophy that says “FIRES Fighter Award.” And his mother Renee believes her son will win the fight against FIRES, a rare form of pediatric epilepsy, with the help of medical cannabis.
That all changed in 2010, while the family was visiting relatives in Jordan. “One day Branden was just playing like normal,” says Renee, “and he told me he had a ‘ball’ on the side of his neck, a painful swollen lymph node. The next day, he woke up with a fever and I thought it was just a regular childhood illness.”
But it wasn’t – Branden’s fever would not resolve, and he grew increasingly tired and lethargic. Renee took him to see a doctor who prescribed antibiotics, but Branden just kept getting more sick, vomiting, sleeping all the time, and becoming increasingly sensitive to light – even the small amount of light from opening the windowshades was painful for Branden. “I knew something was very wrong,” says Renee, “but I had no idea what.” Doctors were puzzled about Branden’s symptoms and couldn’t pinpoint what was going on.
On July 17, 2010, six days after he first complained about the lump on his neck, Branden opened his mouth to speak and paused, unable to form words. “I thought he was just being silly,” says Renee, “and I told him to knock it off.” But Branden wasn’t playing around – just moments later, he had a major tonic-clonic (grand mal) seizure.
Branden was rushed to the hospital, thus beginning a seemingly endless nightmare of doctors, tests, and pharmaceutical drugs that led the family from Jordan to a hospital in Germany, where Brandon was placed in a medically induced coma, before they were finally able to return to the US.
“No one could figure out what was wrong with him,” remembers Renee. “They brought in infectious disease specialists and numerous neurologists. They did an MRI, a CAT Scan, tested for meningitis, tried all these different seizure drugs. I kept thinking, let’s just rewind, this can’t really be happening.”
When Branden finally awoke from his month-long coma in Germany, he was on a wide range of heavy-duty drugs including Phenobarbital, Topamax, Dilantin, Depakote, Lamectal, and high doses of steroids. While Branden’s seizures continued despite these drugs, the side effects were profound.
“When he woke up, he was hissing and growling at us,” recalls Renee. “He was hitting us. They had to put a straightjacket on him and confine him, like an animal. I was like, what did you do to my son?”
The drugs also made Branden hallucinate, and Renee remembers holding him in a bear hug in the middle of the night in his hospital room as Branden cried out and punched at invisible “bugs” he saw on the walls and in the air.
“I wondered, how could this be?” Renee remembers through tears. “A month ago he was swimming, playing, being normal, and now he’s in this hospital hallucinating.”
When Branden was finally considered stable enough to return to the US, he was transported on a special military medical plane carrying injured soldiers. “They loved Branden,” Renee recalls. “Those wounded warriors told Branden he was a hero and gave him their badges. He was too sick to understand, but I knew someday he’d be so proud, since these men were brave soldiers like his dad, who is in the military.”
Back in the US, after going through dozens of tests, numerous hospitalizations, and countless doctors, Dr. James Wheless finally made a diagnosis: FIRES – Febrile Infection Related Epilepsy Syndrome. Identified and named by Dr. Andreas van Baalen in 2008, FIRES is very rare, and affects only about 1 in 1,000,000 children. Due to the generalized origin of FIRES seizures, children with the syndrome are not surgical candidates; the seizures can significantly affect the brain, causing learning disabilities, behavioral disorders, memory issues, and in some cases, death. Like many rare diseases, little research has been done on FIRES, and there is currently no treatment protocol with a good success rate. There is no cure.
While Branden’s medication roster was changed somewhat after his diagnosis, the drugs commonly used for FIRES are intoxicating, unpredictable, and often highly dangerous. One new drug recommended for Branden was Zonegran, which doctors said might fully control Branden’s seizures – but the medication came with a huge risk. “Zongran can cause blindness,” says Renee. “I thought, how could I do that to my child? Stop the seizures but make him blind? I filled the prescription, but could never bring myself to give it to him. I kept thinking, there had to be another way.”
Like many parents of severely ill children with no viable medical options, Renee scoured the internet, trying to find a treatment without devastating side effects, desperately seeking stories of hope. About a year ago, she stumbled onto a story that immediately grabbed her attention: Jason David was successfully treating his son Jayden’s intractable epilepsy with cannabis.
But Branden’s doctors brushed Renee off when she asked about cannabis therapy. “There’s no evidence this works, they told me,” she says. “But I reminded them there is no evidence of anything that really works to treat FIRES, and other parents of epileptic children are saying that cannabis is working.” The more research Renee did, the more it became clear that cannabis might be the answer for Branden.
Renee reached out to other parents of FIRES children online, and was an early member of fireschildren.org, a group developed to discuss treatments and lobby for research and awareness. In the summer of 2013, the group hosted a virtual “FIRES International Day” conference with experts from around the globe, including doctors from Spain, Israel, Germany, England, France, Sweden, Switzerland, China, and the US who shared information and answered parents’ questions.
Renee’s question was simple: can cannabis help our kids? While some of the doctors expressed doubt, a doctor from China told the group that Renee was onto something big, and that treatment with whole plant medicine could be a phenomenal new treatment in the fight against FIRES.
Since then, Renee has lobbied for medical marijuana access in the Petros’ home state of Florida. “This isn’t just about FIRES,” she says, “and it isn’t just about CBD for epilepsy. We also have children and adults who are ill with cancer or other diseases like ALS, not to mention our soldiers – people who are fighting for our country and come back with physical injuries or PTSD – these people should be able to benefit too.”
For those who object to giving children marijuana, Renee talks about what pharmaceutical drugs have done to her son. “When doctors say nothing is known about marijuana, I think about the pharmaceuticals,” she says. “There have been so many times he’s been in the hospital for suicidal thoughts from medications like Klonopin. I honestly believe that he has a serious medical condition, but the pharma meds did even more damage to him than FIRES.”
“It’s natural,” she says. “It’s like a plant vitamin, one that regenerates our body. This is the vitamin for keeping away sickness, for keeping us healthy and happy. People go to something like Xanax, but if they had a cannabis gummy bear or a lollipop instead, this would be a better world. Everybody should be able to have it.”
While Renee has considered moving her family to Colorado so that Branden can have immediate access, for now she is committed to remaining in Florida and fighting for medical marijuana legislation.
She believes that with the help of cannabis therapy, Brandon will recover some of his lost abilities, and may even grow up to be an activist himself. “Someday he could be up there helping other people like I am,” Renee says, beaming with pride for her son, who she says understands some of what is happening and wants desperately to be healthy again. “Someday Branden will be telling other people not to give up and helping other children to see that we won’t give up on them.”
“Sometimes I wonder what the reason was for this, why this happened to our family. To see your child suffering doesn’t make you stronger, it makes you crazy,” Renee sighs. “But maybe it has some purpose: maybe it has brought us to this point so we can help people.”