CEDAR FALLS | Ed Maslak remembers the exact moment he thought his daughter’s life was over. It was about 8 p.m. on Dec. 21, 2002.
While saying good-bye to visiting family, he saw 17-month-old Kendall’s eyes shift to one side, noticed her body freeze up and couldn’t discern whether she was still breathing. He noted the time and date and said, “My daughter is dying.”
Though Kendall survived her first seizure, the Maslaks’ lives would never be the same.
Kendall is now 13 years old and lives with epilepsy. She has been through two brain surgeries that have not stopped her seizures. She takes six pills two times a day to limit her seizures to about every 20 days.
“No seizure is ever an easy seizure. You never get used to it,” Fadua Maslak said. “Every single seizure could be life threatening, and it’s fear that goes through your head.”
Despite their fear, they don their nurses’ hats and start the timer. If Kendall’s seizure lasts 5 minutes, they give her an additional medication. If it doesn’t work within 2 minutes, they call for an ambulance and Kendall is likely to be admitted to an intensive care unit.
Kendall's condition has improved recently thanks to new medications, but it’s far from the “no seizures, no side effects” goal of many epileptic sufferers.
Pushing for change
Since Kendall was diagnosed, her parents have gotten involved with the Epilepsy Foundation and support groups.
The Maslaks also keep up on the latest science and medications for epilepsy. Recently, the began pushing for legislation to give their daughter cannabidiol, the marijuana-derived medicinal oil.
The Maslaks said their doctor, Charuta Joshi at the University of Iowa Hospitals and Clinics in Iowa City, is exploring whether Kendall has Dravet syndrome -- part of a study Joshi is involved with to see whether cannabidiol can help reduce seizures.
The medicinal drug is extracted from the marijuana plant but its strain is low in THC, which causes people to get a high.
Fadua stresses that the medicines Kendall currently takes have their own side effects. Longer term impacts are possible, and the seizures themselves have stunted her cognitive abilities.
The Maslaks understand that cannabidiol may not be a cure-all, but they just ask for the opportunity to try it.
“The way I look at it is you try to keep moving the ball forward,” Ed Maslak said. They are trying to get the recently available state ID card that allows them to legally possess cannabidiol. However, there is no access to the drug within Iowa and it can't be legally transported across state lines.
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Beginning to lobby
At a recent forum with local state legislators, Ed Maslak explained the urgency of getting access sooner rather than later to help Kendall’s brain better develop.
State Rep. Walt Rogers, R-Cedar Falls, who sat on an interim study committee on cannabidiol access, said that there’s unlikely to be movement until the study is completed in the next couple of years.
“She has a seizure every 20 days. I can’t wait a couple years,” Ed Maslak said.
Rogers said, though even if the state passes a law to make cannabidiol accessible in the state it would be also likely to take two years to implement.
The Maslaks said they will persistently lobby for their daughter and a law change that can make cannabidiol accessible. They were encouraged by the response at the legislative forum. Ed Maslak received applause and cheers at the forum for sharing his family's story and asking for access.
Fadua said she believes the issue is largely a matter of education -- explaining the difference between recreational marijuana and medical marijuana and the oil that is derived from marijuana that doesn’t cause any high. She said she also wants to explain the impact on their families by not being able to have access to cannabidiol.
The tip of the iceberg
The Maslaks explain that each seizure essentially resets their daughter’s progress. She has cognitive disabilities as a result of the frequent seizures that mean she cannot read and has trouble speaking clearly.
Any reduction in seizures can help that progress.
“The seizures, as bad as they are, is just the beginning of what our life really is,” Fadua Maslak said, pointing to the medications, the constant monitoring, the extra care that goes into her education and the fear.
“It’s always something,” Ed Maslak adds.
Despite her difficulties, it’s clear that in many ways she’s like many others her age. She sat and played video games quietly at the legislative forum. She attends regualar classes -- with an aide in case she starts to seize -- and has friends over."
The Maslaks focus on letting her be exactly who she is without comparing her to other children -- what they call “the essence of Kendall.”