Frederick mother helps wage letter campaign on medical marijuana

Shannon Moore tries to comfort her son Byron Deliyannis recently. Moore’s two sons, Byron and Nicolas, suffer from Miller-Dieker syndrome, which causes severe seizures, and she is helping with a letter-writing campaign to make medical marijuana more accessible as a medical treatment.

A Frederick County mother whose sons suffer from epilepsy has joined a group of parents in asking U.S. Attorney General Eric Holder to help make marijuana more accessible as a medical treatment.

The 25 letters from parents urge the U.S. Department of Justice to remove marijuana from the list of Schedule I drugs, substances that are considered highly dangerous and with no accepted medical use. In the messages sent Tuesday, the group of parents wrote that the federal classification is one obstacle preventing their children from finding relief through medical marijuana.

In Colorado, epileptic children have experienced reduced seizure frequency after ingesting a cannabis oil, according to the letters.

Shannon Moore, of Frederick, was one of the parents to write to Holder. Her 3-year-old sons, Nicolas and Byron Deliyannis, suffer from Miller-Dieker syndrome, a condition that causes severe seizures.

“Medical marijuana is working for (reducing) seizures,” she wrote to Holder. “If we wait, more parents will go on the black market to find this medicine at great risk, more children will become medical refugees trapped in legal states, more opportunities to study the medical benefits of this amazing plant will be lost, and more children legally using cannabis will be turned away from receiving medical care in hospitals.”

Moore stepped forward earlier this year as an advocate for easing the state’s restrictions on medical marijuana. Maryland legislators ended up passing a bill that would allow patients to access the substance at the recommendation of a doctor.

However, Moore said even in states where medical marijuana is allowed, the federal scheduling can create difficulties for children using it as a treatment.

Melissa Rhoden, another one of the parents who wrote to Holder on Tuesday, said parents are making a similar push in her state of Virginia. However, she said the federal classification of marijuana hampers their efforts.

“So many legislators are simply afraid of marijuana because it’s stigmatized,” said Rhoden, of Staunton.

The parents have requested a meeting with Holder and argued for moving marijuana to the list of Schedule III drugs or other categories that are considered less dangerous. Doing so would allow researchers to explore the medicinal uses of marijuana, Rhoden said.

Rhoden hopes the treatment might help ease seizures for her 2-year-old daughter, Lucy, who has Dravet syndrome. Lucy can suffer from seizures that last for hours and that don’t respond to heavy doses of prescription drugs, which come with side effects ranging from lethargy to appetite loss, Rhoden said.

Moore said she met the other parents through Facebook, and they worked together to coordinate their letter-writing campaign.

“When you’re on Facebook, you get to meet a lot of parents, and you watch their kids die, and you wonder if they died needlessly,” Moore said Tuesday in a phone interview. “For me, that was hard to bear.”

Rhoden said she hopes Holder’s office at least responds to the letters from parents.

“I know it’s easy to ignore an adult, but I don’t know how you can look at those children and ignore them,” Rhoden said.

Follow Bethany Rodgers on Twitter: @BethRodgersFNP.

(6) comments

mamabeck

I wish this article had gone into more detail about Miller-Dieker syndrome. These children suffer everyday with this terrible illness. Whatever could possibly help them live a pain free life (or at least a decrease in the pain) should be made available to them. My heart goes out to Shannon and her family. For those of you who are down on treatments involving Medical Marijuana, walk a mile in these children's lives...then we'll talk.

Extra Ignored

Medical marijuana isn't enough if it doesn't get children access to treatment.

Will the cannabis oil also be available?

Will Medicaid or insurance pay for it?

A month’s supply of the oil can cost $150 to $250, and some families say they receive financial help from a nonprofit group related to the dispensary called the Realm of Caring Foundation.

http://www.nytimes.com/2013/12/06/us/families-see-colorado-as-new-frontier-on-medical-marijuana.html?_r=0

smoo87

I shortened the link: http://bit.ly/1keWtnG.

smoo87

The letters can be found at https://docs.google.com/file/d/0B8vHbB4ZcmO3aUMzSHBsOTJVZENZOEVNZWFOcnNSU0VPOEhN/edit.

Comment deleted.
BecauseICareALot

Epilepsy happens to all ages. Why deny treatment just because someone is young?

jhdotson

I wish the article would have been more clear in describing the treatment. The oil used and prescribed does NOT contain properties that a child can get "high" off of. In many, many cases this is the only treatment that works for children and parents are faced with tough decisions in states where it is illegal and cost prohibitive. The states efforts to legalize this medication are absolutely hampered by the Federal government. I have a daughter with severe epilepsy and seizures. She takes a cocktail of medication that currently offers good seizure control, but when she needs rescue medication the side effects are awful. The daily medication has long term effects and its efficacy will likely diminish over time. This is absolutely an option that is needed, is proven effective for many and that needs to be rid of the red tape that prevents it from being utilized. I promise, if you have ever watched a child seize for hours you would sign on to this letter as some sort of possible hope. It is a sight you never forget or get used too.

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