When the seizures hit, 14-year-old Isabel Jurado can’t come out of them.
Her parents and caregiver scramble to find the life-saving medications to end the life-threatening episodes which, each time they come, further weaken her body.
Isabel, also known as Izzy, can’t tell anyone whether she is in pain.
“We rely on a lot of extra medication to pull her out of seizures on top of regular daily meds,” Izzy’s mother, Leslie Jurado, said.
Izzy, who is wheelchair-bound and can’t speak, suffers with Sanfilippo Syndrome, a rare genetic disease that robs children of developmental milestones such as walking, talking and eating. The disease usually sets in after many victims already have developed normal childhoods as toddlers. The life-expectancy for children with the disease is in the mid-teens.
Leslie Jurado received a dose of hope early this week when South Carolina lawmakers introduced legislation that would legalize medical cannabis, or marijuana, for patients suffering from debilitating medical conditions.
The South Carolina Compassionate Care Act would allow Leslie Jurado and other caregivers to administer cannabis with a doctor’s recommendation and strict regulation through the Department of Health and Environmental Control.
According to an article published by South Carolina Compassion, “the Department of Health and Environmental Control would license and regulate a limited number of qualified medical cannabis cultivation centers, processing facilities, independent testing laboratories, and dispensaries. It would issue registration cards to patients with qualifying medical conditions who have received written recommendations from their physicians, allowing them to purchase a limited amount of medical cannabis from a licensed dispensary.”
South Carolina Compassion is an advocacy organization pushing for medical legalization.
Children with Sanfilippo Syndrome also can experience inflammation in the central nervous system, which can cause dystonia, a movement disorder that causes painful and uncontrollable muscle contractions.
“(Use of medical marijuana) could have potentially great effects for improving quality of life in stopping all this neurological storming,” Leslie said. “It’s just a chance to ease suffering and give our family members the best quality of life they can have.”
Izzy currently takes CBD oil, a cannabidiol compound that became legal in South Carolina in 2014, but proponents of the legal marijuana legislation introduced last week say the full marijuana component, or THC, will cover other debilitating conditions. Some of these include epilepsy, post-tramatic stress disorder, cancer, autism, among others.
“It would give us some hope,” Leslie Jurado said. “It would give us another option of something to try, and not feel like we are creating more problems in her.”
Jurado said she has noticed that using the oil shortens the length of the seizures.
A 2016 Winthrop University Poll, commissioned by The State newspaper and published on the South Carolina Compassion website, has determined that 78 percent of the people questioned believe cannabis should be legalized for medical use.
But not everyone agrees with that poll.
Bob Norwood, executive director of York County All On Board, a 70-member coalition that supports community programs geared to end drug and alcohol abuse, opposes legalizing marijuana for medical use. He said he believes the drug will end up in the hands of underage users and will open the door for legal recreational use.
“Medical marijuana is a big stepping stone to recreational marijuana,” Norwood said. “Those of us that feel that we are going down the wrong path feel that we will be unable to stop (at legalizing medical marijuana).”
The effects of medicinal use has not been studied by the FDA, Norwood said, and legalizing another “addictive” substance is dangerous.
A former Chairman of the Rock Hill School Board, Norwood said “people on the other side of the issue” still “have a heart for those suffering” with severe medical problems.
Norwood said the name of the bill — South Carolina Compassionate Care Act — insinuates opponents are not compassionate.
“I don’t know anyone on either side of this that is not compassionate about someone with a debilitating disease,” he said. “We have a heart for those suffering.”
Norwood said one concern opponents have with the bill is a broad interpretation of who may use the drug.
“How do you measure pain?” he said, adding that severe pain is not an “illegitimate” issue, but it is a broad issue. “Those conditions kind of open the door to usage of people who may not need it.”
The decision is in the hands of the lawmakers, who Leslie Jurado said she considers a voice for her daughter. A Senate committee last year shot down a similar bill introduced in 2015.
“We are doing everything that we can to spend precious time with her and let her feel that we love her and to be her voice and be her advocate,” Leslie Jurado said.
The mother of four said she believes Izzy has a purpose and part of that is to help enact the medical marijuana law.
“It’s time we move past the stigma and make this available for people in need,” she said.
Tracy Kimball: firstname.lastname@example.org