Harrisburg, here I come!!

Was woken this morning to Lorelei climbing into bed with me….love morning snuggles with my baby girl. Next was up and time to get ready for school. She did pretty well this morning with only one breakdown. She hates to have her hair messed with so its always a challenge to do her hair for school but we got it done. No breakfast as usual, its hard to get her to eat anything most of the time. Not sure if its the meds or just the unique way her brain works but most of the time food is either too hot, too cold, too crunchy, too mushy, to dry, to wet, she doesn’t like the way it tastes or she doesn’t like the way it feels. Meal times are always a struggle.

Lorelei was heartbroken this morning when I told her that I wouldn’t see her again until tomorrow morning because I was going away for the day. What she doesn’t really understand with all that I’ve been doing lately is that its for her. Today I’m heading to Harrisburg (Pennsylvania’s capitol) for an open mic/forum. I am so ecstatic to be able to finally look the committee members for the medical marijuana bills in the eyes and tell them why legalizing medical marijuana is so important. I hope they can shed their politician skin long enough to be open to the human side of all of this. There are so many suffering and my Lorelei is one of them.

Fingers crossed for a productive day! Love and hugs.

Welcome!!

Hey everyone! Today is the official launch of the site. Very excited to have gotten so much support so far. There is still a lot of work that needs to be done. Please browse the page and check out our story, links, and resources. My little Lorelei deserves so much more and so do thousands of others that could be helped by medical marijuana.

Together we can be a louder voice and a stronger force. Thank you all. Love and hugs

Reading Eagle Article

Medical marijuana might be best answer for little girl’s epilepsy, but it’s illegal in Pennsylvania
9/9/2013

Nothing is working for Lorelei Ulrich.

The 6-year-old Reinholds girl has these small moments, hundreds of times in a day, when she stares into space. It looks harmless, but the four-second flashes are actually seizures.

Developmentally, she is 4 years old and falling behind. Behaviorally, she struggles with her impulses, going from crying to smiling to screaming, as if someone is controlling her with a switch.

Lorelei has a form of epilepsy that is intractable, meaning it doesn’t want to respond to treatment. Her parents have tried to combat her seizures with special diets and drugs. They haven’t helped.

Nothing has worked so far, but Lorelei’s mother, Dana, believes she has found something that could change her daughter’s life: medical marijuana.

The problem is medical marijuana is illegal in Pennsylvania.

“It’s very frustrating,” Dana said. “For thousands of years people have used cannabis as a means for treatment. I see that children in other states are benefiting from it. The frustration for me is: I live in America. I’m part of the United States. Why are children in other states afforded medications that are not afforded to my child?”

Dana and her family are pushing to legalize medical marijuana in Pennsylvania. They say it could help Lorelei and thousands of others dealing with chronic and debilitating medical conditions. Dana has created a petition, written to her local representatives and to President Barack Obama, calling for change.

Dana wants to give her daughter a cannabis oil that she says is low in the psychoactive compound found in marijuana and high in the compound known for its medicinal benefits. She said she has discussed her options with Lorelei’s doctors.

Her daughter would not have to smoke the marijuana, but would receive it through an oral syringe, Dana said.

There is momentum building around medical marijuana in other states.

In August, the U.S. Justice Department said it would not interfere with state laws in Colorado and Washington legalizing marijuana, potentially opening the door for other states to approve similar laws.

Medical marijuana is already legal in 20 states. In Pennsylvania, two bills have been introduced into the state House and Senate this year that would legalize it.

But local officials say it’s unclear if those bills will ever come up for a vote, and even the representatives who are calling for medical marijuana legislation are skeptical change is on the way.

“In Pennsylvania, it has to go through the Legislature,” said state Sen. Daylin Leach, a Montgomery County Democrat who introduced the Senate bill to legalize medical marijuana. “And we don’t really do anything in the Legislature.”

Fighting epilepsy

Dana has researched medical marijuana and believes it could help control her daughter’s seizures, which started before Lorelei turned 2 and have only gotten worse and more frequent.

Lorelei is happy, but her seizure medication makes her aggressive and volatile.

On a recent afternoon, Lorelei tried to flip a light switch about six times before leaving to play outside. When she got there, she pinned her sister, Jolan, 3, on the ground and wouldn’t let her up.

Later, she was smiling and complimenting a visitor on her shoes.

“When I do have those few times where I feel like my Lorelei is here, I see the clarity,” Dana said. “She’s happy. She likes to play with her kitties. She likes to play on the computer.”

But Dana clearly worries about her daughter’s future.

“If there isn’t an effective treatment found she will not develop normally as the years go on,” Dana said. “I’m afraid for her to not grow up and have a job, have a family, a husband, kids of her own. These are all things that a mother wants for her child.”

Stigma

The bills in the state House and Senate would allow patients to carry 1 ounce of cannabis and grow up to six plants for medicinal use. Patients would need a recommendation from their doctor and would have to register with the state before they could begin using it.

Even medical marijuana’s strongest allies in the Legislature believe it is going to be difficult to pass legislation in Pennsylvania.

Leach said he has heard from many families with similar stories, who could use marijuana to help with cancer, HIV, glaucoma, epilepsy and other conditions.

“The path of least resistance is to ignore the issue,” Leach said. “We’ll pass it three weeks after Mississippi. That’s where we are in terms of social progress issues.”

Rep. Jim Cox, a Spring Township Republican, said he supports medical marijuana legislation.

But he said it would be hard to pass through the Legislature without assurances from the federal government that it won’t interfere with state laws.

“I’ll do whatever I can to push that process along,” Cox said.

Gov. Tom Corbett has said he would veto any bill relating to the legalization of marijuana, medicinal or otherwise. Attempts to reach the Corbett administration were unsuccessful.

Concerns

Marijuana is still considered a very dangerous drug.

Drugs are classified in five categories based on their accepted medical use, potential for abuse and potential severe psychological or physical dependence.

Marijuana is listed in Schedule I of the Controlled Substances Act alongside heroin, LSD, ecstasy and other psychological drugs that have no currently accepted medical use.

Berks County District Attorney John T. Adams said legalizing medical marijuana could lead to more drug problems in Berks and elsewhere in Pennsylvania.

“I think it would have a huge effect,” Adams said. “I think that legalization of marijuana, which many of the experts consider a gateway drug, would have a negative fallout in our state and our county.”

Still in doubt

It’s possible medical marijuana won’t help Lorelei.

Currently, she takes two anticonvulsant drugs for her seizures and medicine to deal with the behavioral side effects from those drugs. Doctors want to try another drug for Lorelei’s seizures, but so far nothing has worked and the side effects are tough for her family.

Dana and her husband, Jason, recently watched a special on CNN about medical marijuana, which only bolstered their belief that it should be legal for Lorelei.

Dana said she wants to give her daughter a chance at a full life. She wants to see her daughter for more than glimpses at a time.

Dana still has hope.

“I can’t say with any certainty that this is going to help her, but I need to give it a try,” she said. “I think it’s only fair for her to have this option.”

Contact Matthew Nojiri: 610-371-5062 or mnojiri@readingeagle.com.

(Image by: Reading Eagle: Lauren A. Little)