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Dixie Pace Family, South Carolina
Dixie Pace’s seizures started at age seven. At first, it was one every other week or so. After a year, they were weekly. A decade later, she was experiencing 50-100 a day. By then, she was taking or had tried every anti-seizure medicine available.
The sedative effects of those pharmaceuticals left her with a lisp so severe her mother had to translate for other family members, and the serious side effects included a deadly rash and psychosis. Grand mal seizures necessitated a helmet to protect her from head injuries, and drop seizures caused so many shoulder dislocations that arm braces were required. When a qEEG digital brain scan revealed that the medications she was taking were causing more brain damage than the seizures, her parents had reached the end.
“We had heard about cannabis,” Dixie’s mother April says, “We got to studying, and met two ladies who were advocates.”
This was in the Fall, two years ago. Dixie was 18. The three families tried to get CBD under South Carolina’s new state law for pediatric seizure patients, but no one could find or obtain it. So they started looking for medicine on the underground market.
“We didn’t think our kids would make it to Christmas,” April says.
They started experimenting with CBD and THCa as much as they could, but like many patients in states without robust medical cannabis programs, they found it hard to obtain the types of medicine they sought, and often had to deal with shadowy, unreliable providers.
In July, the Pace family took Dixie to Maine for three weeks. There, she was able to try several different cannabis strains and products, and her seizures dropped immediately to only five to seven a day. Her cognitive functioning improved dramatically, as did her ability to speak and be understood. Instead of 13 medications -- eight anti-seizure, four to treat the side effects, and a sleep medicine -- she know takes just two.
“We’re living right now,” says April. “Before we had nothing. There were phases when all we could do was lay on the couch. Then she was a zombie from the medications.”
The Pace family has worked hard to educate elected officials in South Carolina and now enjoy support from their sheriff, state House representative and senator. They have been working closely with Senator Tom Davis, who has introduced legislation each of the past two years to expand South Carolina’s highly limited medical cannabis protections to a robust program that provides safe access.
“Our kids need protection and access to any strain, whether THCA, THC, or CBD,” says April. “We need the options.”
Neither bill passed, but last session Sen. Davis started reading a patient story each day in the Senate. April reports a palpable change swept over the statehouse. They will try again with a more limited bill in the next two-year session, which begins in January.
Dixie is 20 years old now, but after 13 years of attempting to manage her seizures, her mother is not done fighting for her and other kids who need medical cannabis. April will be working with Sen. Davis on new state legislation and has been lobbying her federal representatives, too. The day after the federal Drug Enforcement Administration again refused to reclassify cannabis for medical use, she met with her senior U.S. Senator, Lindsey Graham, who told her his whole office was behind her efforts, urged her to keep working at the state level, and assured her Congress would do something soon.
“We’re blessed that our daughter can speak,” says April. “So we let her be the voice for those who can’t.
This profile was originally published in the September 2016 ASA Activist Newsletter
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