It all began with a note passed in secrecy. A little piece of paper that would change the life of Heather Jackson’s son Zaki, who experienced 500,000 seizures by the time he was five years old. The note would lead to the trial of CBD. The risk was worth the reward. The results were so dramatic for her son's recovery, Heather eventually made it her life's mission to share everything she knew about CBD with anyone who'd listen. What started as just sharing information parent-to-parent, turned into the Realm of Caring Foundation, in conjunction with Johns Hopkins University, is conducting the most extensive cannabinoid therapy observational research study in the U.S.—and soon the world.
The story began in 2003. Heather’s son Zaki was born with a rare catastrophic form of early childhood epilepsy called Myoclonic Astatic Epilepsy, also known as Doose Syndrome. He spent the first nine years of his life with uncontrollable seizures, sometimes as many as several hundred a day. The worst year was 2008, when his EEG showed 200 episodes an hour. He spent the better part of a decade in a “seizure coma."
Then Zaki transitioned to receiving hospice palliative services. His prognosis was bleak. They had been through all the available prescribed pharmaceuticals, seventeen of them. Zaki's parents turned to alternative practitioners. They saw an iridologist, an herbalist; an acupuncturist; a chiropractor; a cranial sacral therapist. No stone was left unturned.
But, to their surprise, their hospice counselor had another family who was doing well with cannabis. That family was the Figi’s, and their daughter Charlotte was making tremendous strides. Then the counselor found some paper, wrote down a phone number, and said, "I can't recommend this, but I know another family very similar to yours. Call them.” It was this moment that would forever change the life of Zaki and thousands of other children in the U.S.
Five months from Heather's initial conversations, Zaki had his first dose of CBD, and the seizures halted for a full 48 hours. And, while the seizures briefly returned, they were less severe and less frequent. Heather adjusted the dosage, which lead to Zaki being seizure-free for almost four years. Zaki began to learn, to be social, to develop a personality. For the first time, his parents were able to meet the real Zaki, the child without heavy-hitting pharmaceuticals and without seizures. Four years later, onset by puberty, Zaki's seizures started again. But this time, they were brief, mild, manageable, and still, 99% controlled. That four-year period gave him the gift of time that allowed for his development to blossom. Today, at 16, Zaki drove a Razr while camping—once an unthinkable dream.
Between Heather and Paige, the word was spreading in the medical cannabis world, while Joel Stanley and his brothers were providing free CBD to over 400 families in need. Then came Dr. Sanjay Gupta of CNN who heard the rumblings, took an interest, and decided to air Charlotte Figi’s story.
An educational and research-based non-profit organization, Realm of Caring does not give any medical advice. They do provide information that people are then recommended to speak to their doctors about. People need to be able to have access to credible information when speaking to their medical professionals. "They need to understand how to assess quality products. They need to know how much to take. They need to know if there are potential medication interactions. They need to know how to have this conversation with their doctor. They need to have all of that information at their fingertips," says Jackson. Realm of Caring also has a provider’s portal for doctors with over a thousand doctors who are registered.
No longer is it just about epilepsy. Realm of Caring now serves families and individuals who are dealing with all kinds of health conditions such as chronic pain, cancer, autism, anxiety, and depression. Realm of Caring fields thousands of inquiries within their call center every month. What started in Heather’s kitchen has now grown to serve more than 56,000 people worldwide and has a Child Development Center which provides individualized education plans for children ages 3-18 with or without special needs. Thus far, Realm of Caring has also given $450,000 directly back to families in need through grant programs.
Now, alongside Johns Hopkins University, Realm of Caring is conducting the largest cannabinoid therapy observational research study in the U.S. They are tracking how much people use and how it helps their condition and plans to publish this data very soon. The idea is to open source this information so that doctors, consumers, and the industry can use it to improve the quality of lives around the world.
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