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On October 4, 2013, 10-year-old Zaki Jackson celebrated his “One Year Seizure Free Anniversary.”
Zaki stopped having seizures when he began using Charlotte’s Web, a high-CBD strain of medical cannabis that his mother, Heather Jackson, credits for saving her son’s life.
Yesterday, friends and family gathered in Colorado Springs for a big party to rejoice in Zaki’s good health, and to raise funds for the Realm of Caring, a Colorado-based foundation that helps families obtain special strains of medical cannabis for their specific health care needs.
Heather took a break from celebrating to chat with Ladybud about her son, her role at Realm of Caring, and why she wants the world to know about Charlotte’s Web.
Ladybud: What was life like for Zaki before he started on Charlotte’s Web?
Heather Jackson: Zaki has a rare severe form of epilepsy called Doose Syndrome. His seizures started at 4 months old (and he’d) had 500,000 seizures by the time he was 5 years old. Zaki has had peaks and valleys over the years, like many children with a catastrophic epilepsy diagnosis. Just before we started CBD, he was in a valley, having an average of 200 seizures a day as well as having seizures in which he stopped breathing. He was receiving hospice palliative services.
LB: How did you first learn that medical cannabis could be helpful for Zaki?
HJ: The catastrophic epilepsy community is pretty close knit. I learned of cannabis as an option when I heard of Jason David’s story with his son Jayden. And I remember thinking, this isn’t just some story on the internet, I know them. This is when I started researching, like I had done for all previous treatment options we used for Zaki.
LB: How did you first connect with the Stanley brothers and Realm of Caring?
HJ: Actually that is an interesting story. I heard about them through our social worker through the hospice waiver my son was on. Her position would not allow her to make recommendations, so she carefully asked if we had thought about it as an option. I told her I had thought a lot about it, and had been talking to our doctor about it for about 4 months at that time. She connected me with many resources, the lab, and other families. It was providential. I will always be thankful to Ms. Cate for being brave enough to say something.
LB: And now you work for the Realm of Caring?
HJ: I am working for the Realm of Caring as the Executive Director. I came on about 8 months ago when the volume was picking up quite a bit. It is really fun because nothing like this exists; we are truly inventing the wheel. I don’t think I could find anything more important to do with my life after how life-altering this has been for my family.
LB: We’ve heard about a lot of families moving to Colorado to get Charlotte’s Web for their children. Can you tell us a little about that process?
HJ: It is so unfortunate that families have to pull up roots and leave family, friends, and their medical services to seek this as therapy. But they are doing it! We have 85 families that have done that now, with over 200 wanting to. There is such a wonderful community waiting here for them. The thing that warms my heart the most is the level of commitment and love that everyone has for one another.
Once a family makes the decision to start the Realm of Caring program, they should get on the wait list, they must establish residency, seek two physician recommendations for their red card, and establish all of their follow up care with neurology. But there is much more! They have to learn to navigate a whole new state, services, neighborhoods, schools, therapies, and specialists. It is not easy at all. But they have what I call an “end of earth kind of love,” for their child and they are figuring it out with help from families who have done it themselves.
The heartbreaking part and the hardest part of what I do is having to talk to the families who cannot do it. They just can’t. And the families who can do it, are medical hostages here in CO because if they leave with their child’s life saving medication, they are drug traffickers! It’s ridiculous and wrong on so many levels. I believe it is a human rights issue. I am hopeful this will change. It has to. Legislation has to change!
LB: How did you and your family celebrate Zaki’s 1 year seizure-free anniversary?
HJ: It only seemed fitting that we had a big bash! We have been calling it “Zaki’s seizure free birthday.” Zaki asked, “how old momma?” I told him he was “One! Incredible.” We invited the community to come celebrate with us. We received a $10,000 match for the Realm of Caring, so we are working hard to raise at least that much!
There is no paid staff at the Realm of Caring. This is terrific, but not a sustainable model. They need money to be able to continue their life changing work, and to help more families as well as put systems and infrastructure in place to bring this treatment to more people who need it, and do not have the time to wait for it.
LB: What would you say to people who still oppose medical cannabis?
HJ: I would say that I understand how you feel, I understand there is a lot of propaganda and myths surrounding the plant. But I would ask them to take a look at our journey and have an open mind. If they are inclined, please look at the research. There is actually a ton of it!
Have them understand that we aren’t trying to make a statement. We have no agenda. We were simply trying to save Zaki’s life, and give him a better quality of life. His overwhelmingly positive response is making the statement. We then had an obligation to tell the story. We are just trying to spread the word. Don’t walk a mile in my shoes. Simply hold your child one time while they seize and turn blue because they have stopped breathing. Tell me, what would you do if it were your child?