Born with a rare genetic condition that causes severe developmental delays and uncontrollable seizures, Zaki was just four months old when his trouble started. By the time he was five years old, he had experienced hundreds of thousands of seizures. Maggie started having seizures at just six weeks old. After trying countless medications to help, she was still seizing constantly. Their families felt lost around what to do, wondering what their children’s quality of life would be.
That’s when these families found hope through the Realm of Caring, when there was nothing left to lose.
Read RoC’s family messages in their own words:
Zaki’s Family- Heather, Frank, and Zarek
Heather: I think we do need to listen to our doctors, but what do you do when you’ve done everything they say, and you’re still not better? I think it’s just how we’re built. We’re conditioned to go to the doctor, the tools, the prescription pad, and then that’s it. It’s just our model. It’s western medicine. And it’s not common in other places; it’s just very common here. I think that people can feel better. We know that we’ve seen that over and over again. And so, we want to help people do that.
Heather: He was just going to start preschool down at the school. We were really concerned about his safety.
Frank: It was hard. One of the things I noticed, and I don’t even know if I should be saying this. He got stared at a lot because of how he looked-he was big—that kind of pissed me off.
Heather: We got a lot of stares because he was always bruised up and banged up from his drop seizures and then on steroids with his weight.
Heather: Zaki started having seizures when he was only four months old. And by the time he was five, he had had hundreds of thousands of seizures. I thought that they would definitely be able to tell me why this was happening. I didn’t understand in the world of neurology; you just usually don’t know. And so, we really didn’t get any answers as to why, but things were getting very severe. They were progressing pretty quickly. He would have early morning seizures in which he would stop breathing, and his lips would turn purple-ish blue, and his nail beds and medications wouldn’t stop those. We recently discovered that he has a rare genetic condition, CSNK2B, a gene mutation that causes severe developmental delay and uncontrollable seizures. He’s number 30 in the world. It was just a completely out of control situation. We had been through 17 pharmaceuticals, and Zaki had transitioned to being on hospice when he was nine years old. I definitely felt hopeless. You just feel like 100-pound sandbags on your shoulders. And it’s hard to move forward, feeling like that. It didn’t matter what we did; we just couldn’t stop it.
Maggie’s Family- Rachel & Shawn
Rachael: She used to eat orally, up until a year and a half ago. So, she was probably six and a half, seven almost. And now we switched to an outer tube to get more nutrition in her because we couldn’t keep up.
Megan was born typical, and at six weeks, she started having seizures and totally rocked our world.
Shawn: It was 5 to 600 [seizures] a day. I was thinking, I mean, this is probably it; she’s not going to have any quality of life.
Rachael: And we just tried everything we could. We had her on six different pharmaceuticals at one point, four different anticonvulsants, and then two to deal with the side effects of the other four, and she still was constantly seizing.
Jason, Army Veteran
Jason: I joined the military in, I don’t even want to say the year! And I spent a year in Iraq. It was the most dangerous place in the world at the time. I was hit with a rocket-propelled grenade. When I got rocked, I didn’t even hear the explosion. I just remember the flash heat and everything kind of slows down. You know, I suffered for many years with a mild traumatic brain injury and definitely PTSD. I noticed I was not doing well. I know that I was short-tempered, and sleep was nonexistent. And I just kind of sucked it up, you know, did my thing went to see my army doctors. You’re trying to maintain yourself and function as a normal person, but you feel like you’re kind of in a shell too. Taking pills was not helping.
Heather: We, fortunately, received some counseling services through hospice, and we had the most amazing counselor. She told me about the founders, and we found cannabis; we found CBD, Charlotte’s Web. So that was kind of all she wrote after that.
He took his first dose of Charlotte’s Web on July 19th of 2012. And within hours, his seizures remitted. They were less frequent, they were less severe, and then he didn’t have another seizure for close to four years.
Zarek: I remember Zaki when he was doing a lot better when the seizures started to reduce a little bit.
“His personality just flourished.”
Heather: Zaki loves to be outside. He loves to just play and build things. And all of those things were just so hard before, but there are definitely still some challenges. I mean, there’s collateral damage from that many seizures. I know that Zaki wants to drive, and he’s not going to be able to; you have to be able to read. But he’ll be able to be productive and happy, and I think he’s already changed the world. So, there’s a lot of people who can’t say that by the end of their lives, and I know that Zaki has. I mean, one option would be to heal your child and then just go on with life and say, “Man, we really won that.” And move on. I just couldn’t. I know that there were so many other families that needed at least the potential to try cannabis and hemp. So, Realm of Caring really was just birthed out of sheer necessity. We had to get the word out to families that there’s a potential option here. And originally, hemp was not legal. You had to move to Colorado. So, we had this huge influx of families. I mean, over 500 families came here.
Rachel: It was right before she turned a year old. I had seen one of the stories, and I know it was Heather and Zaki. I came out to Sean, and I said, “Sean, there’s something about this cannabis Sativa.” We had decided that we were going to pack-up and leave East Tennessee and head for Colorado.
Shawn: It was a big moment in our life. I think it was a big turning point because we could do something to save our daughter.
Rachel: Maggie was 17 months old when we started her on cannabis
Shawn: It was our last-ditch effort. It was our last chance to try and save her life. Realm of Caring was there.
Rachel: Since we gave her that first dose, instantly, we saw her digestive track pick up. Within three months, she had a 30% reduction in her seizures, and now she probably had like a 90% reduction in her seizures. And just two months ago, we found out the genetic condition that she has. It’s RARS2: Just a genetic mutation that she has, and she’s one in 50 out of the entire world. Her quality of life has exploded drastically. She can enjoy her brothers. She has a voluntary movement.
Shawn:
“We’re seeing more and more of her revealed, which is just amazing.”
Rachel: We got out here in October of 2013. No doubt in my mind, by Christmas, she would have been gone. And we just celebrated her eighth birthday. I consider that a success.
I think we really take each day and see it as a treasure.
Jason: I was looking up, you know, some of the data on cannabis and how it would affect me. And I tried it a couple of times, and I felt great. I wasn’t anxious because it was helping me. So when I first started going to the Realm of Caring, when I saw the kids that were struggling through their seizures and disorders and things like that, and they were using cannabis to help them out, I wanted to help them out any way I could. I’m lucky. You know, it’s just me, I’ll be okay. But these parents they’re stressed out all the time. I can’t help but connect with them.
Whenever I think about Heather, the only facial expression I think about Heather is a big smile. She’s my anchor. She is my connection to the Realm.
“She’s touched more people than I believe she even knows.”
Heather: This is the recently published paper on our data over the last four years. We co-published this with Johns Hopkins University. It showed scientifically what we thought we knew anecdotally. People are doing much better: They’re sleeping better, they go to the hospital less, their anxiety’s reduced.
I never imagined that this would be my life, but I’m so, so thankful that it is because Zaki is still here, and it’s a way that I’m able to make meaning of 10 years of suffering. I’m really proud of that.
Rachel:
“I don’t know if there’s one word that could encompass the Realm of Caring: Support.”
But it’s a community of people; it’s research. There’s just so much, and it’s expanded and grown to something so much bigger than any of us could have even imagined.
Heather: Things have changed a lot. We helped 22 States pass some legislation that would allow for cannabis as therapy. The community is really what this is about. I mean, the plant was the catalyst, but it’s 100% about community.
“You’re not alone.”
We’re here with you, and that is the Realm of Caring.
Read the Director Jeremy Seifert’s Take on the Film
I remember being surprised by the immediate warmth and connection with Heather and Zaki when I first met them in the Garden of Gods’ parking lot. We laughed while struggling with the mic placement while maintaining six feet distance and seeing half a face through their masks.
It struck me how sincere and authentic they were as a family, not falling into the pitchy version of a story told so many times before. This is often the work of a filmmaker, getting to those natural moments that reveal true character.
With Heather and Zaki, it was effortless.
I certainly wasn’t prepared to meet little Maggie and listen to her parents, Rachael and Shawn, talk about the pain of her struggle and theirs.
Sometimes filmmaking can be fiddling with white balance and exposure, framing up the shot just right; all of this can feel so petty and heartless when everything you want is to put the camera down and let them know you care more about them than the film. That’s the discipline, though. Knowing that a well-made film can bring justice to their story. That kind of love and power can affect real change and allow others to connect with their experience and story in profound ways.
“Maggie’s story helped shed light on just how important Heather’s work has been and what an incredible network of connection and love the Realm of Caring is for families.“
Telling the Realm of Caring’s story was a true delight. It was humbling and inspiring all at once. I’m so grateful for the opportunity to be a part of their story.
Learn more about Realm of Caring volunteer, or donate: https://realmofcaring.org
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