Law change brings hope to sick kids
The legalization of medical marijuana last year in Pennsylvania ended years of lobbying but also started new debates as businesses applied for grow permits and dispensary permits.
The dispensary permits determine the locations where patients with doctor’s prescriptions can purchase the cannabis products prescribed for the 17 different ailments the law identifies as being able to be treated. Among them are epilepsy, cancer, autism, glaucoma, HIV, Parkinsons, multiple sclerosis and post traumatic stress disorder.
The legalization of medical marijuana is spawning a lucrative, new pharmaceutical industry in Pennsylvania, with positive ramifications for communities – and controversy about how and where permits have been awarded.
But for some people, particularly parents of children with epilepsy and seizure disorders, the law means just one thing: hope for their children to have a normal life.
At a recent World Medical Cannabis Conference in Pittsburgh, three parents with children with special needs talked about how giving daily doses of cannabis oils to their children helped improve their quality of life.
“Children, yes, use cannabis,” said Andrew Hard, CEO of CMW Media, who moderated the hour-long panel. “It’s great for them and it’s great for their health. Yes, that may be a controversial thing to say, but yes, it also very much is the right thing.”
Just ask Lauren Marcheskie of Royersford, Montgomery County.
Marcheskie has gone through a parent’s worst nightmare of watching her young child suffer, as her infant daughter Aria endured seizures.
Marcheskie told her story to Digital First Media reporter Evan Brandt, recounting the emotional roller coaster of trying to find help for her baby.
The seizures began when Aria was just six weeks old. The seizures — “her head turns left and her body stiffens” — only lasted five seconds at first, “but I knew it wasn’t right,” said Marcheskie.
Eventually, Aria was diagnosed with focal cortical dysplasia, a disorder from birth that causes seizures which cannot be controlled by medication.
Knowing what it was didn’t make things any better. In fact, things got worse from there. Aria was having 60 to 80 seizures a day, each lasting as long as two minutes, and she was being treated by a smorgasbord of pharmaceuticals.
What followed were seesaw months of trying different drugs, having them work for a time, a brief period of hope, then the return of the seizures.
In 2015, Aria had brain surgery to remove part of her right temporal lobe and small part of the parietal lobe and occipital lobe in an attempt to stop the seizures. As a result, her vision is impaired.
Afterward, Aria was seizurefree for 45 days, and then they started up again. Aria had a second brain surgery that September but the seizures continued so her parents started looking for other options instead of even more pharmaceuticals.
“She was already on three medications and it hindered her development, we were working with her on animal sounds and she wasn’t getting it. She was like a zombie,” Marcheskie recalls.
“We thought, we can’t keep putting her through this. There has to be a better way.”
She found a better way on the Web — Haleigh’s Hope, named after Haleigh Cox who was suffering from hundreds of seizures a day. Because the medication is classified as hemp oil, Marcheskie was able to get it shipped across state lines to Pennsylvania.
By last April — four months of taking a few drops every day of the oil mixed with the extract of that particular strain of medical marijuana — Aria was seizure-free during the day and only seizing in her sleep.
The introduction of a form of medical marijuana into Aria’s treatment was a life changer for Marcheskie and her daughter. Like the name of the medicine, they have hope for the future.
Their story is one of many told by parents in seeking access to cannabis drugs that will help their children.
As with many issues in this conservative Commonwealth, it took a while to achieve the legalization of medical marijuana.
For children like Aria, that wait will soon bring positive results.