Dallas resident Penny Howard thought she would have longer with her 5-year-old daughter, Harper. Harper was born in April 2010 with a rare, life-threatening disorder called CDKL5 epilepsy. The girl died in January 2016, but her life and death are making an impact in the world of orphan diseases, the term for rare diseases that affect a small percentage of the population.
“The cool thing is we had an opportunity to give her a legacy,” her mother says.
Howard says her daughter was simply “existing” in a vegetative state until they discovered cannabidiol oil, known as CBD oil. Harper made eye contact first, then began verbalizing for the first time in three years and eventually started answering yes-or-no questions with head nods and a computer that helped her speak. She was able to tell her parents her likes and dislikes, such as her favorite singer, Elvis, and her favorite animal, the zebra.
Howard and her daughter became medical marijuana advocates. Based in part on their outreach, Latin American countries such as Paraguay, Colombia and Brazil legalized medical marijuana.
At 2 weeks old, Harper began to experience severe seizures that caused her eyes to widen and her arms and legs to jerk as if she were being electrocuted. The severity and intensity of the seizures led to a dislocated jaw and had high probability of killing her, Howard says.
They traveled to meet with Dr. Frances Jensen at Boston Children's Hospital. She'd been booked for more than a year but had a cancellation. Jensen did blood tests and an EKG, but it took four months for the test results to come back. Harper received a diagnosis of CDKL5, a disorder so rare that fewer than a 1,000 people worldwide have it.
Because Jensen was in Boston, she wasn't able to treat Harper, so she spent a couple of hours on the phone speaking with the Howards' neurologist in Dallas to develop a course of action, which included some powerful medications that were especially dangerous for Harper.
“Doctors don't want you to give your infant Tylenol, yet she was taking all these drugs,” Howard says, and they had worse side effects.
At 19 months old, Harper had a surge of seizures that put her in a vegetative state. She was experiencing more than 40 seizures a day, and standard medications were not working.
The Howards were watching TV one night in September 2013 when they came across Dr. Sanjay Gupta's CNN special “Weed” and learned that medical marijuana was used to treat seizures. But they lived in Texas. Howard says the family knew if they wanted to treat Harper with it, they would have to uproot and join the other medical marijuana refugees in Colorado or other progressive states.
It was nearly an impossible task, Howard says, for a child like Harper.
They started researching for an alternative and found CBD oil from hemp called Real Scientific Hemp Oil, or RSHO. They noticed instantaneous relief for their daughter. They began playing with doses and eventually stopped Harper's seizures completely.
“I'll never forget giving the CBD oil to Harper and seeing the immediate impact it had on her quality of life,” Howard wrote. “Within the first three days, we had eye contact and verbalization sounds from her, an attempt to interact with us physically and she was now able to show us that she was with us mentally.”
Dr. Stuart Titus, a cannabis industry icon and innovator known for his expertise in groundbreaking cannabinoid research, says CBD was known as the “hippies' disappointment” in the 1960s because it doesn't have the same effect as smoking a joint. Titus practiced as a British physiotherapist for 15 years and, in the mid-2000s, became CEO of Medical Marijuana Inc., the first publicly traded company in the U.S. to engage with legal cannabis. It created the CBD hemp oil category and introduced the first natural botanical hemp-based CBD products to U.S. markets.
Titus says there was research about the human body's endocannabinoid system dating to the 1980s, but cannabis has been used as a medicine since ancient times. The Chinese once used cannabis as medicine, including its oils, tinctures and other cannabis-based preparations.
But the Chinese weren't the only ones using it. Until the 1930s, American doctors and physicians routinely used cannabis-based medications until the federal government began to prohibit them, Titus says. He had firsthand experience with hemp-oil products as nutritional supplements because he was using them to relieve his Lyme disease symptoms.
Cannabinoids are compounds found in cannabis plants and interact with the endocannabinoid system, the largest self-regulating system within our bodies. Titus says it uses cannabinoids to transmit certain signals and regulate homeostasis to balance mood, appetite, sleep and hormone production. Our bodies produce cannabinoids, too, and our cells have receptor sites, which helps to regulate our immune systems. Research has shown that a deficiency in cannabinoids plays a role in treatment-resistant conditions such as migraine headaches, fibromylagia and chronic fatigue syndrome.
On Facebook, Howard chronicled Harper's struggle with CDKL5 epilepsy and how RSHO helped her. Katiele Fischer of Brazil, another mother of a child with CDKL5 epilepsy, found it. Fischer had relatives in the U.S. send CBD oil to Brazil, where it's illegal. When Fischer started giving it to her daughter Anny, her seizures began to disappear, too.
In April 2014, Fischer sued the government of Brazil for her right to access RSHO for her daughter. In three days, the court ruled that it would be “inhumane” to keep it away from her. After the ruling, other families across Brazil began to sue the government and revolutionized the country's medical marijuana laws. Howard says she's angry that the FDA and the U.S. government have been hesitant to give the same relief to millions of Americans.
Although CBD hemp oil helped ease her daughter's seizures, it wasn't a cure, and the “fine line between hope and hopelessness,” as she wrote, ended in early January 2016, when Harper died.
“As a mom, I really can't write into words what it's like to lose your daughter,” Howard wrote in her Huffinton Post article. “It's like a hole inside of you and really nothing ever fills that, nothing will ever make that better or make it go away.”
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Howard told the Observer that the family had started a nonprofit called Hope 4 Harper to help raise money for research and donated Harper's body to science in hopes that researchers could find a cure for CDKL5 epilepsy. Harper's brain was sent to Harvard's Brain Tissue Resource Center. Jensen, the doctor who originally diagnosed Harper and who now works at the University of Pennsylvania, is studying it.
People don't understand what it means for researchers to have an organ donation for scientific use, Howard says. Millions of dollars are invested to create disorders in animals for study. Howard says that having human tissue and a brain with the disorder to research is a “block of gold for science.”
“This is a simple gift that we could provide science for the purpose of our daughter,” she says.