Mother advocates for boys who have persistent seizures

Bethany Rodgers, The Frederick News-Post

Shannon Moore's twin boys had their first seizures at home, when they were just 4 months old. And at the hospital, where Moore and her husband hoped to find help for their sons, doctors couldn't promise any relief.

"They told us that (our sons) had a rare genetic disorder that caused them to have deformed brains and not to look too far into the future," said Moore, of Frederick.

The mean life expectancy for children with Miller-Dieker syndrome is two years, so at age 3, Nicolas and Byron Deliyannis have already beat the averages, Moore said. However, their first years of life have included almost daily seizures and a parade of medications to control the epilepsy. Moore has watched her twins take medicine that can be addictive, medicine that can be toxic, medicine that can cause blindness.

And no matter what they try, the seizures are able to break through the medication, Moore said.

However, a CNN report that mentioned marijuana's potential for calming seizures in children gave her hope that better treatments were possible. The only problem: There is no legal way for her to get medical marijuana in Maryland.

During this session of the Maryland General Assembly, Moore said she is lobbying for change so that, perhaps, her twins will have the chance to try the treatment.

Now, she is making her case through email and phone calls from a room in Children's National Medical Center; her two sons are recovering from a feeding tube surgery that became necessary because seizures have diminished their appetites and made it difficult for them to swallow. 

With numerous marijuana-related bills on the horizon this session, Moore has teamed up with former Frederick Alderwoman Karen Young and Delegate Patrick Hogan to highlight the substance's potential benefit to children with epilepsy. 

"I know it's a controversial issue, but at the same time, if it's something that can help her kids, then I feel like it's worth doing," said Hogan, R-District 3A.

Twenty states and Washington, D.C., currently allow medical marijuana. Of those, only two states bar minors from receiving the treatment, said a spokesman for the organization Americans for Safe Access.

Young said she has reached out primarily to Senate lawmakers on Moore's behalf. Hogan says he has spoken with Delegate Dan Morhaim, a physician and leading advocate for permitting medical marijuana. This session, Morhaim, D-Baltimore County, said he plans to sponsor a proposal that could enable children with epilepsy to receive the treatment.

Last year, Maryland passed a bill that would give patients access marijuana through academic medical centers. But so far, none of the academic institutions has taken advantage of the new law, so there is still no legal pathway to marijuana-based treatment.

Morhaim said his new proposal would also allow Maryland physicians on staff at a hospital or hospice to recommend medical marijuana for patients with certain conditions. The bill will likely get introduced in the Legislature next week, he said.

He noted that marijuana is less dangerous than many other drugs he prescribes every day, such as blood pressure, diabetes and pain medicines.

"In fact, there are medicines you can get over the counter that can have potentially more serious side effects than marijuana," he said.

Delegate Michael Hough said he hasn't seen Morhaim's proposal and doesn't want to comment on it. However, he has opposed other medical marijuana bills out of concern that easing up on medicinal uses could lead to full-blown legalization. At a time when Frederick County is struggling through a drug abuse epidemic, lawmakers need to take a tough stand on marijuana, he said.

"I want to make sure I have our law enforcement's back when they're trying to fight against these drug dealers," said Hough, R-District 3B.

Moore said she used to think "medical marijuana is a joke," but she has completely reversed her opinion. While the substance likely wouldn't take away her sons' seizures, she said it might perform as well as their current medications, but without some of the harmful side effects.

"In all likelihood, it wouldn't mean life or death, but it could mean that they would be healthier and happier for longer," she said. "I just want to know that I've done everything I can for my kids."