UNION COUNTY, N.C. — Doctors said a Monroe teenager’s life-altering disease is about one in four million in the United States.
Ali celebrated her 19th birthday. It’s one that doctors told her mother a long time ago would never happen.
Ali was an active child. She played sports and took dance lessons. She started having seizures at age 6 and they got worse.
Years later, after her blood test made it to Finland, she found out she has Unverricht Lundborg disease; a rare and progressive form of epilepsy that basically deteriorates a person’s central nervous system. Her seizures are now non-stop, 24 hours a day, seven days a week.
It’s estimated about 80 people in the U.S. have the disease, according to Dr. Nathan Fountain, with the national Epilepsy Foundation.
“Because it is so rare, the local physicians we’ve seen have no idea how to treat this,” said Kendra Martin, Ali’s mother.
Kendra Martin has struggled with watching her daughter’s health quickly degenerate over the years despite having a team of nurses at the home rotate to care for Ali.
“There is no cure at all … to see this disrupt her life has been very difficult,” Martin said. But she found something that helps a lot — medical marijuana.
“I feel better … and more alert,” Ali told Eyewitness News anchor Liz Foster.
Kendra Martin has to get medical marijuana from a supplier in another state because it’s illegal in North Carolina.
“It’s extremely disappointing to me,” Kendra Martin said. “My child’s life depends on it. If we do not have access, at this point, it’s holding her heart rate steady and her blood pressure.”
Kendra Martin said they’ve thought of moving to another state that has a medical marijuana program. She added if Ali stops ingesting it, she may have to go on life support.
“I have a choice of watching her deteriorate or medicinal marijuana,” Kendra Martin said.
Next week, Kendra Martin said Ali is going to be part of a medical study in Wake Forest for a neurologist to see how she does with medical cannabis and how she does without it. They’re hoping it pushes for a change in the law to help people like Ali, and others with life-threatening, debilitating diseases, cope.
Twenty-three states and the District of Columbia have medical marijuana programs. Earlier this year, Mecklenburg County Rep. Kelly Alexander introduced a bill to legalize medical marijuana in North Carolina. It never made it out of committee.
Alexander told Channel 9 he’s drafting a new measure now that would allow people with a terminal illness to have access to cannabis.