Medical Marijuana Gives Life to Seizure-Stricken Girl
Karen Diller is a staunch supporter of Pennsylvania’s medical marijuana legislation, and the York startup that wants to bring a dispensary to Chambersburg next year.
She and her husband, Jeff, have seen what medical marijuana can do for extreme seizure disorders such as the rare genetic disease that has incapacitated their daughter Karly for so much of her life.
Karly has been part of clinical trials at a New York City hospital studying the effect of medical marijuana on intractable seizure disorders for two years, and the Dillers say the results have been astounding.
“Nothing had helped before, not the special diet, not any of the drugs, but medical marijuana has made a huge difference in my daughter’s life,” Karen said. “It is the best medication we have tried.”
The cannabis oil used to treat Karly’s condition has reduced her seizures by about 70 percent and done it without the often severe side effects of all the drugs doctors had tried during the first 18 years of her life.
The Dillers had two children — Kyle, who was 5 and Katie who was 3 — when Karly was born in 1997.
Karen had a normal, uneventful pregnancy, and little Karly checked out fine at the hospital following her birth. She was perfectly healthy, her mother said.
“I was so thrilled to have three little kids,” she said. “I had three beautiful, healthy children, a great marriage, a new home… everything I could want in life.”
Kyle and Katie doted on their baby sister, and all was right in the Dillers’ world.
When Karly was two weeks old, she had her first seizure.
That day is burned into her mother’s memory as if it was yesterday.
“Karly was in the baby swing when suddenly she arched her back and her hand swung up as if she were reaching for something,” Karen remembers today.
It was startling, but it didn’t happen again and she and Jeff went to bed that night puzzled but not sure exactly what had happened.
“Then it happened the next day again, and again and again,” Karen remembers.
She grabbed the video camera and filmed it, hoping she was wrong about what she was already suspecting were seizures.
Then she took the video and her baby to the doctor.
It was the beginning of a long journey that would see the Dillers and Karly’s doctors try drug after drug in search of something that would control what had become multiple seizures that wracked Karly’s little body day after day.
When Karly was six months old, still searching for answers, the Dillers took her to Johns Hopkins Hospital, a teaching hospital and biomedical research facility of the Johns Hopkins School of Medicine in Baltimore.
A neurologist there suggested a special ketogenic high-fat, low-carbohydrate diet, so the couple took their baby home and started measuring all of Karly’s food, to the gram.
For 11 weeks, the diet seemed to be working. and the family was ecstatic.
During that time, Karly smiled for the first time, rolled over and made eye contact with her parents and other family members.
“We were overjoyed,” Karen said. “You would think we had won the lottery.”
But their joy and optimism didn’t last. The seizures came back.
Still, the Dillers kept Karly on the special diet for two years, until other new drugs came on the market, each with promises that brought the family hope for a solution to the disorder that was ravaging young Karly’s body.
In the ensuing years, Karly’s doctors tried a lot of different drugs in an effort to control her seizures, all of which had side effects and none of which solved the problem.
“I felt like I was frozen in time,” Karen said, remembering wondering how she could move forward, and at times wondering how she could deal with Karly’s daily seizures and still take care of the rest of her family.
Then, one day Kyle found her crying and asked her what was wrong.
She told him she just wished Karly was normal.
“But she is normal Mommy,” he said. “She just does things different.”
It was a wake up call for Karen.
“It took me about 10 years to realize Karly is perfect, her spirit is perfect,” she said. “In those early years I was trying to fix her, but I couldn’t. There was nothing I could do, nothing the doctors could do.”
She said it was a long journey, but she finally realized that God was in control, and that her job was to love Karly and do the best that she could for her.
That didn’t mean she gave up trying to find something to help her child, however.
Karen began to hear about medical marijuana and reports that it could help severe seizure disorders.
“It was in the news, and I heard about hospitals doing clinical trials, so I started looking for a hospital that would take Karly into one of their trials,” she said.
She made calls, she researched, she hoped.
Finally she happened upon a New York hospital — New York University’s Langone Medical Center — that was doing medical marijuana clinical trials and looking for patients with exactly the kind of seizures Karly was experiencing.
Karly was accepted into the program two years ago. She was 18 and was having multiple seizures every day.
“We were so excited to get her into the trial,” Karen said. “We were very hopeful, but doubtful. We had tried everything and so far nothing had helped.”
It was January 29, 2015, when Karly was given her first dose of medical marijuana in the form of an oil.
The results were dramatic, reducing her seizures by 60 to 70 percent in just weeks, and improving her quality of life to the point that she can now go shopping with her older sister, Katie, go the the prom with her brother, Kyle, and get in the swimming pool on warm summer days with her Aunt Kim.
As a part of the clinical trial, the Dillers still keep meticulous records and Karly is seen regularly by doctors who monitor her progress and do regular blood work.
While they don’t know how much longer Karly will be a part of the clinical trial, they are encouraged by the fact that in another year they might be able to get Karly’s medication in Chambersburg as a result of the state’s medical marijuana legislation.
They were one of the early supporters of the legislation. Once she saw how much medical marijuana helped Karly, Karen was determined to make sure it was available to everyone who needed it.
So she set out telling Karly’s story to everyone who would listen, including people who turned out for this month’s town hall about Viridis’ proposal to open a dispensary in Chambersburg.
“I like what Viridis has planned,” she said. “I like their proposals for growing and processing (medical marijuana) in a greenhouse and without using chemicals, and I really like their plans to have doctors and medical professionals on hand at the dispensary who are specially trained to dispense (the drug).”
Life for the Diller family is still far from what most people would consider “normal.”
Karly still has some seizures, but they are fewer and farther between,with many seizure-free days.
The family takes one day at a time, and Karen and Jeff give thanks for the good days.
Today Kyle is in medical school, studying to be a doctor. He will come back to Chambersburg eventually to practice family medicine with Summit Health.
Katie has graduated from Shippensburg University with a degree in finance and works locally for Global Data.
Their younger sister, Julie, is now 17 and a student at the Career Magnet School.
Karly, now 20, is seizure-free enough of the time to enjoy life and interact with those around her.
Karen and Jeff are able to get out for an occasional dinner, or go away for a week while Kyle, Katie and Julie take care of their sister.
Karen still has times when she worries, but she said she has learned to turn those worries over to God.
“God is in control,” she said. “It took me a long time to realize that.”
She remains a strong advocate for medical marijuana, and a supporter of Viridis Medical.
“Many others who need this medicine aren’t fortunate enough to get in a trial for their diseases and disorders,” she said. “That’s why Viridis will provide opportunity and hope to others.”
She is enthusiastic in her support of the York firm, feeling that God put Karly in her life for a reason — to love and treasure, but also to be a voice to help others who need the relief that medical marijuana can bring to their conditions.
If Viridis gets permits for its growing-processing facility in York and a dispensary in Chambersburg, Diller said others in situations similar to Karly’s will benefit.
“These patients will be followed by trained and educated medical personnel,” she said of Viridis’ plan. “They won’t have to try to do this on their own.”
This article first appears in the Chambersburg Public Opinion.
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