In the months since Georgia’s 2014 legislative session ended without passing proposed medical cannabis legislation (due to political games, not lack of support), the community of medical refugees in Colorado has grown.
Notice anything funny about the south? Sing with me! One of these things is not like the others… Admittedly, the laws in the bordering states are of varying efficacy. South Carolina, for example, is only an immunity law that protects you if you are caught with high CBD strains, but does nothing to help patients obtain it. Florida, on the other hand, is allowing for the growing and selling of high CBD strains next year. If Amendment 2 passes in November, Florida will be able to enact an even more comprehensive program that will benefit more people and conditions.
So now meet some of the Georgia families that are waiting to return to their homes, families, doctors, therapists and friends.
The Cox family
The Georgia bill HB 885 was also named Haleigh’s Hope in honor of this little girl who turns five this month. Shortly before this year’s legislative session ended, Janea and Haleigh packed up and moved to Colorado because Haleigh, who has Lennox-Gastaut syndrome, was suffering life-threatening seizures that caused her to stop breathing. Her dad, Brian, was unable to go with them because of his job and now they have to live apart.
As I scrolled through the Hope for Haleigh page I was struck again by the change in her. Janea takes and posts a lot of pictures and I could see the improvement, but in looking for before pictures, I was struck by how difficult it was to find photos of her looking at the camera or smiling. Now we see quite a few of those. Sitting in a swing by herself wasn’t possible a few months ago. She also said her first word in Colorado — Mama. Haleigh is not seizure free and still has some rough days, but she has also had some seizure free days. That simply didn’t happen before she started on Haleigh’s Hope provided by the Hope Foundation. Janea has said that she felt like she was finally meeting her child these last few months. Haleigh has even been able to wean off one of her seizure medications. But living apart from Dad is emotionally taxing and they hope that 2015 will bring legislation that will allow them to be a family again.
The Oliver family
Tripp had his first seizure on April 9, 2009 and was diagnosed with Dravet syndrome. He has tried more than a dozen medications since then and in April of this year, he and his mom moved to Colorado where he started THCa through Realm of Caring. It was hard to leave Dad and his team of therapists who have spent years working with Tripp in speech, occupational, feeding and physical therapy, but since then he has had two separate three-week streaks in which he had no convulsive seizures. Mom describes him as brighter and happier with improving speech capabilities. You can follow his journey at Tripp’s Trip.
The Klepinger family
The Klepingers left for Colorado late last year. They still own their Georgia home with the hopes they can return to it and their extended family and support network. Hunter is still doing well on Charlotte’s Web. I shared Hunter’s successes previously in this post. Since then, Aaron and Dawn have a welcomed a third child, lovingly nicknamed their Colorado Tumbleweed.
Aaron invites any legislators with doubts to come to Colorado and meet the kids. “Seeing is believing,” he says.
The Clark family (follow them at Hope for Caden)
“My Caden has had thirteen completely seizure-free days! Understand that was never a possibility before! He no longer seizes during the daytime at all, only at night,” Kim Clark posted in May of this year. “There was no hope before this, nothing. Caden’s life was seizing somewhere between ten up to into the hundreds times a day. There was no life. Coupled with the side effects from medications, my boy was miserable. Now we are so blessed that he is 10 years old and we are trying to learn how HE CAN LIVE!”
But Caden’s healing has come at a price. The Clarks are also a split family. Kim is in Colorado with the kids and Dad Chris has had to stay behind in Georgia for work. They share the same reality as the other families living hundreds of miles apart. Dad can come visit them, but they can’t go home to see him because they can’t legally travel with the oil. Recently, Kim and Chris traded places for a short period so she could make a trip home.
The Sumlin family
Sheryl and her daughter Trinity arrived in Colorado earlier this summer.
It’s early to gauge the response of Trinity’s seizures to Haleigh’s Hope since mom opted to titrate up to the usual starting dose, an incoming tooth is causing seizures and Trinity is requiring supplemental oxygen as she adjusts to the altitude. However, Mom is seeing beacons of hope in small things like wiggling her toes, calmness, awareness, making sounds and sleeping better.
But leaving her support network has been extremely tough. “It is harder than I thought it would be,” Sheryl says. “Although it’s beautiful here, it is not home. My daughter’s school and that whole network has been a huge part of our lives for the last 5-6 years. Also, friends who knew us since forever. I think it’s unfair that we have to move so far to have an opportunity to try this medicine.”
Sheryl is out there without nursing help or a car. Prior to flying out she donated her vehicle to another family in need. A fundraiser was set up by a third party to help her with expenses, but she never received any of the donations that were made on her behalf. She is grateful to the Journey of Hope foundation, a non-profit started by Rep. Allen Peake, for coming through and helping her financially with the move.
The Lowe family (follow them at Paws for a Princess)
Corey worked tirelessly during the 2014 legislative session to persuade Georgia legislators how badly we need access to cannabis. She was devastated when it didn’t pass, and by May, her daughter’s seizures were getting out of control. She had a tough decision to make.
In June, with help from Journey of Hope, they packed up the car and drove across the country leaving behind Corey’s job, her husband and Victoria’s siblings.
Since starting on Haleigh’s Hope, Corey tells me Victoria has had an 80 percent reduction in seizures. From several a day to this:
The incredible eye contact and improved communication Victoria is showing now helps alleviate the pain of leaving their home, but Corey still worries.
“It’s great, but at what cost,” she told me. “How will this affect my children, who I left behind, in the long run? Will they resent Victoria because I had to leave them behind? How is not having a mom around affecting them?”
She also feels guilty about the families that simply don’t have the means or circumstances to move across the country. “The absolute worst part about having this medicine is seeing kids back home that need it. It’s hard to celebrate the success when kids are going into the hospital because of seizures.”
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6 thoughts on “When will Georgia’s medical cannabis refugees come home?”
The fact of the matter is, until there is comprehensive cannabis law reform there will always be medical marijuana refugees. What you and other parents like you are forced to go through with your children is horrible, but even if CBD-only legislation is passed there will remain thousands of others who need help from the rest of the cannabis plant that will continue to move in search of legal medicine. We have created an organization that helps people do this. You can find us at http://www.healthyhopes.org.
Signs are positive that we are finally moving in the right direction. Congress has taken the lead in attempting to remove barriers to banking for the cannabis industry, as well as an attempt to de-fund law enforcement raids against dispensaries and producers in legal states with the latest spending bill. Hopefully states will pick up on this shift in political climate and start crafting smarter legislation to account for the multitudes of conditions that can be treated with this plant, rather than focusing on a microscopic segment of the population. No argument that it helps both children and adults who suffer from intractable seizures, but it could do so so much more!
I’m in total agreement. I also want to see more comprehensive laws in place and not just CBD only. I totally recognize that THC has valuable medical uses and that whole plant medicine is very important. Though this post is focused on seizures due to that being my personal experience and the experience of most of my friends, I also think it should be open to adults and children with a variety of conditions and I hope we can we can get there soon for all that need it. Thanks for letting me know about your organization!
FDA RESCHEDULING Mmj…
Agreed. I’m part of a parent group advocating for change at a federal level.
I do not understand the stupidity and ignorance in denying these precious kids a medication that can help them. NY has passed medical marijuana for some illnesses and seizure disorders is on the list. They say the program will take at least 18 months to get going. Bethany will be an adult by then. I am hoping that we’ll be able to get it for her even though she’s had better seizure control for almost two years. I’d like to see if it decreases her aggressive behavior too.