Tag Archives: Haleigh Cox

Deal. Real. Before pharmaceutical companies I kneel.

Nathan-DealThere is a very misleading headline floating around that the governor is supporting a bill for medical cannabis. It is not true. Yesterday Governor Nathan Deal dropped the bomb that he will veto a medical cannabis bill with in-state growing. He will, however, sign off on HB1 immediately if it is stripped to immunity only. What this means is that he wants sick people to travel to legal states, obtain cannabis oil that falls within the parameters described in HB1, and break federal law to bring it home. This is what he considers helping the people. Frankly, I’m impressed his hand isn’t too cramped up to sign any bills with all the patting he’s been doing on his own back for talking to GW Pharma about Epidiolex trials, the pharmaceutical version of CBD from the cannabis plant. (Isn’t it funny how pharmaceutical companies can find a medicinal use for a plant that is classified by the government as having none?)

Here’s the thing. Last year Rep. Allen Peake presented HB 885, also known as Haleigh’s Hope for Haleigh Cox. It started out with a plan for growing but got stripped in committee. I won’t rehash the whole ordeal again, but by the end it was also just an immunity bill with no way for people to obtain cannabis in Georgia. It had the votes, but Senator Renee Unterman killed it by attaching another bill that she knew good and well the House wouldn’t hear. Several families were down at the Capitol as the clock counted down to midnight on the last day. They went to Deal’s office to beg him to intervene, but he refused to come out and meet with them. He has said to reporters since then that he has met with the families. Most of the families would love to know who those families were and when because we’ve been trying to figure it out. He could have encouraged an immunity bill through last year but he chose to hide in his office.

He has known all along that there was a plan and a need for growing in the state. By agreeing to immunity only, he is encouraging families to break federal law by transporting it back to Georgia. You can be charged if caught driving through an illegal state or by TSA when flying. Not to mention the expense and challenge of people with serious medical conditions needing to leave the state to obtain it.

Throughout the 2014 election he was asked where he stood. He was vague and always pointed to what a great job he was doing talking to GW Pharma about bringing Epidiolex trials to Georgia. He was quiet as Rep. Peake led a committee during the months between sessions to create the legislation for HB1. He waited until this past Friday to finally be straight about the fact that he has no interest in genuinely helping the people in Georgia that could benefit. For him to not veto HB1, it must be stripped. He claims to want to appoint a committee to look into growing in 2016. Well, what have you been doing for the past year, Gov. Deal? And if he didn’t think Peake’s committee was doing a suitable job, why didn’t he step in? Because that wasn’t the issue. Deal is playing a different game. Meanwhile, people are sick and dying and many aren’t finding relief from traditional pharmaceuticals.

Sen. Curt Thompson has also announced his plans for SB7. It is a more comprehensive plan that is well-received by those who want to see a medical marijuana program in Georgia, but it isn’t expected to have a shot given that it allows so much more than Georgia legislators are comfortable with and is being introduced by a Democrat in a good ole boy Republican legislature.

But what can we expect from Deal, a man who secretively met last year with Sheldon AdelsonAdelson funded 85 percent of the campaign against Amendment 2 in Florida, which would have brought a comprehensive medical marijuana plan to the Sunshine state had it passed. In an amusing twist, Las Vegas casino king Adelson’s other pet project, besides keeping sick people from having more options, is blocking online gambling because “Internet betting could harm children and other vulnerable people.”

The AJC recently conducted a poll that showed 84 percent of Georgians support medical cannabis.

Want to share your thoughts on this subject with Deal? Give his office a call at 404-656-1776.


Related reading:

Georgia’s Deal caught up in ethics controversy

Gov. Deal’s campaign pays his daughter-in-law’s firm $600k




Connor gets to join an Epidiolex trial!

We’ve been waiting months for confirmation that Connor can take part in a compassionate use trial for Epidiolex. His doctor was on board, but had to submit paperwork and jump hurdles due to the absurd schedule 1 classification by the DEA. Epidiolex is a marijuana-derived pharmaceutical. It contains CBD, and no THC. As we are still fighting for medical cannabis legislation here in Georgia, Chris and I desperately wanted this legal opportunity for Connor.

I actually cried when I got the confirmation. I had no idea how much of a weight this was on my shoulders until that moment because I hardly ever cry anymore. People who have known me for a long time might think, yeah right. I used to be Queen Crybaby, crying over the stupidest little things all the time. But now, on the rare occasions I do cry, it is still over something stupid — like the death of a favorite character on Walking Dead (and unlike some people who like to spoil things instantaneously on Facebook, I STILL won’t name names here for those who are playing catch up on Netflix–oops, veered off on a pet peeve tangent. Suffice to say, the instant someone croaks, you don’t need to flippin’ post it). But I never cry over important things that I probably should. Sometimes it kind of weirds me out and I wonder if something is wrong with me. At any rate, I knew tears were a sign of how important this is to me. As you can see, I may not be able to display emotion when it comes to Connor and TSC, but I’ll sob and punch you in the face over The Walking Dead.

Epidiolex trials are exceptionally difficult to get into, and I don’t know how we got so lucky. I know so many who have tried and haven’t been accepted. This also doesn’t change the need for legislation. Epidiolex is one formulation. It is not the same thing that kids like Charlotte Figi or Haleigh Cox are using out in Colorado. They are on whole plant strains of high-CBD, low-THC oils called Charlotte’s Web and Haleigh’s Hope. Some kids are benefitting from THCa. Others are supplementing with THC when the ratios in the oils don’t hit the spot for seizure control. And it will still be years before Epidiolex is available to the general public. What I’m saying is, Epidiolex isn’t one size fits all. But we hope it will fit Connor.

We aren’t sure on the start date yet. Before he can receive his first dose, he’s required to have a screening appointment. Being the holidays, the next available appointment isn’t until Jan. 6. I was rather dismayed by that as you must keep track of the seizures for a month after that appointment, and that meant he can’t start the med until February. But he happens to have a follow up appointment on the calendar already in early December. The study coordinator is looking into whether that slot will allow enough time for the screening. That would put him on the med by early January. Fingers crossed it’s sooner rather than later.


When will Georgia’s medical cannabis refugees come home?

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.

Haleigh before. 
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Haleigh after.











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.

Julian, Chase and Hunter.
Julian, Chase and Hunter.
Hunter with Rep. Allen Peake, sponsor of Georgia's 2014 medical cannabis bill. Peake flew out to Colorado to meet the families.
Hunter with Rep. Allen Peake, sponsor of Georgia’s 2014 medical cannabis bill. Peake flew out to Colorado to meet the families.

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!”

Kim posted this photo recently with the caption "Slowly healing."
Kim posted this photo recently with the caption “Slowly healing.”

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.

Kim sits on the front porch of her Georgia home, possibly for the last time, as they plan to put it on the market due to the expense of maintaining two households.
Kim sits on the front porch of her Georgia home, possibly for the last time, as they plan to put it on the market due to the expense of maintaining two households.

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.”

The first dose.
The first dose.

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.

Interviewing with CBS 46 about their impending move after Victoria was admitted to the hospital.
Interviewing with CBS 46 about their impending move after Victoria was admitted to the hospital.

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.

10564845_10152238336840905_49063206_n“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.”


The Klepinger, Clark, Lowe and Sumlin family sharing their 4th of July celebration in Colorado.
The Klepinger, Clark, Lowe and Sumlin family sharing their 4th of July celebration in Colorado.



Related Posts:

The Side Effects of Medical Cannabis

U.S. Representative John Fleming Is Out to Prevent Access to Medical Cannabis for Our Kids


And another medical marijuana refugee is born…


Janea and Haleigh left for Colorado yesterday. Haleigh is the little girl for whom HB885 is named “Haleigh’s Hope Act.” The awesome Rep. Allen Peake met her and immediately began his crash course into the world of medical cannabis and CBD oil, pushing this Georgia bill with everything in him.  But Haleigh’s declining health means she can’t wait. Her father must stay behind in Georgia because of his job.

HB885 has passed the senate committee but with major changes. Cultivation is out. Basically, it provides legal protection to a person caught with CBD oil. It does not help us obtain it. This was always a hurdle even with cultivation (there were different issues surrounding that). You’d have to get it in a legal state and get here without being caught. Frankly, places like Realm of Caring are not going to sell it to you knowing you plan to cross state lines against federal law because that puts them in danger of being shut down by the DEA. It’s important to understand that this bill, even if passed on the senate floor, signed by the governor and made law, would not allow everyone to run out and get it for their kids. It does prepare our state, however, for a change at the federal level. If the feds reclassify it with the DEA — as they need to — we are ready to go. And hopefully, passing this in such a conservative state will add more pressure to the federal government to get off their butts and help people.

Another twist is that a separate bill is now attached to HB885. The chair of the senate committee, Renee Unterman, has been trying to pass a bill for five years (Ava’s Law) mandating that insurance companies cover treatment for autism (Georgia is one of a minority of states that don’t require autism to be covered). A compromise bill that increases benefits up to age 6 is now part of a package with HB885 called the Kid Care Act. The autism bill has also been tacked onto HB943, which would prevent insurance discrimination over certain types of cancer treatment. The reason is that the autism bill alone would have to go through subcommittee in the House, and thus far, they haven’t been willing to hear it. By tacking it onto bills that have already passed the House, it bypasses the subcommittee when it goes back to the House for approval for the change.

Now the bill must go through the Senate Rules Committee and then go to the Senate floor for a vote. Then it goes back to the House for approval. Last day of session is March 20. Nothing like going down to the wire! Once again, if you haven’t e-mailed your Georgia state senator yet to support HB885, you can find out who yours is at openstates.org.

Also of note are two op-eds in the AJC today. Eli Hogan shares his experience living with Crohn’s Disease and it is a great read. It is followed by a  counter-point from Rep. Sharon Cooper. As you read it, please keep in mind that she voted to pass HB885 twice. First out of committee, then on the floor. I would also urge you to read some of the excellent comments from parents below the essays.

If you missed Sanjay Gupta’s follow up to last year’s special Weed, you can find it here. The original is here. Anyone who cannot invest the 45 minutes it takes to watch at least one of these has no right to question the people who are fighting for these changes.

An unsettling appointment and a great press conference

Quick plug: Lisa Cummings, another TSC mom I know through our online community often writes and shares poems about her life with her daughter, TSC and special needs. She just published her first collection of poetry and it is available through Amazon. Please check it out here.

The journey toward the ketogenic diet continues…and might end with me jamming a screwdriver in my ear. We have been pursuing diet therapy since before Thanksgiving. The wait lists at keto clinics are ridiculous. The one that could get us in the earliest was in Alabama, so we had our new patient appointment Tuesday. Two hours there and back again. Connor’s neurologist had sent his 157-page chart over well in advance. I knew that this appointment would be, for the most part, a formality as the neuro that will oversee him on keto has never treated him. As expected, it was a lot of repeating his history. There was only one thing I wanted after 2.5 months waiting–the date Connor will be admitted so we can get this damn diet started. We’ve had this hanging over us for months, afraid to plan trips and make plans. I thought that would finally come to an end yesterday, but it didn’t. She agreed to take him on, but we still have to wait to hear when he gets admitted. She hoped it would be February, but couldn’t say for sure. So until they call, I have to worry that they will want him during the March dates we’re in DC or Boston OR that they will want him in right before those dates and I will have two days to prepare for traveling on this insanely strict diet.

To be honest, the appointment was a little strange. First, I was bummed to find out that our stay will be longer than the typical keto stay because she wants to do an EEG first. Granted it has been a while since he had one, but I don’t want to spend a week in the stupid hospital. But if that’s what it takes to get things going, I wasn’t going to argue. The thing is, we just got the feel that she wasn’t that thrilled with the ketogenic diet. She wanted to know why we weren’t pursuing surgery. I consider surgery a last resort for the most part. It was an easy choice the first time because the seizures were so frequent and causing major developmental delays. But he’s much better now, and has already responded to some tweaks I’ve made in his diet on my own leading me to believe the diet will be beneficial. Also his EEGs, while indicating activity from the left occipital lobe, have also shown activity from other areas.

Don’t get me wrong…it’s not that we wouldn’t consider surgery again if a newer EEG could determine one particular tuber as the only or primary culprit (and my guess is that it would be the one in the left occipital) but since our referral was specifically for the diet, I really wasn’t expecting such enthusiasm for surgery. The doctor even made a point of expressing concern about potential side effects of the diet, and I was thinking…what is going on here? At any rate, surgery is not on the table for us right now. I see no need for that if keto can do the trick.

I know neurologists have very differing opinions on the best course of action…I just finished reading a book (I recommend Fighting Back With Fat by Whitmer and Riether) that talked about how the diet was often used decades ago, but fell out of favor with the emergence of so many pharmaceutical options coming on the market. It made a comeback in the 90s when the son of a filmmaker — Jim Abrahams — was diagnosed with epilepsy and he wasn’t responding to medications. The ketogenic diet was his savior. His father later made a film called First Do No Harm with Meryl Streep and started the Charlie Foundation. Since then keto clinics have popped up all over the country, and in many countries around the world. More and more neurologists are coming on board with diet therapy because it has proven results, but there are still some that shy away, especially in other countries. The book had me so gung ho on the diet, that this neuro’s lackluster response threw me for a loop. The nurse that came in prior was very enthusiastic about it. But forward we shall move.

Wednesday was a better day. I finally met many of the other parents fighting for HB 885/ Haleigh’s Hope so that we can have access to medical cannabis in Georgia when we met for a press conference at the capitol building. I’ve been to DC to meet with legislators, but this was actually my first trip to the gold dome, even though I’ve lived in the Atlanta area since 1992. I was not prepared for how packed it would be. As a former teacher, I feel I can express what so many of you are thinking in many public places (i.e. Fernbank, the aquarium, the zoo, etc). Field trips are evil. A necessary evil. But evil nonetheless. I remember being at the aquarium in the role of teacher, with multiple schools crowding the walkways, and looking at all the people who paid full-price admission and thinking, “You poor b*******.” As I crammed onto crowded capitol elevators, I thought, the kids need to see these places, but perhaps we should pass a bill banning scavenger hunts. But I digress.

Dressed for politicking at the capitol.
Dressed for politicking at the capitol.

It was freezing outside, very much in contrast with the 100 degrees inside the building. The room numbers are all out of order, too, thus ensuring a healthy workout. I started out meeting my representative Don Parsons, who has signed the bill. We had a nice conversation and he asked me many questions about Connor. Then I had a scheduled meeting with my senator Judson Hill. That didn’t happen as he had not come in that morning. I was disappointed to say the least. I am not sure where he stands on the bill as I have had no luck getting a response from him. I continue to follow up.

Check out that landmark in background! Pshh. Not the gold-domed capitol...Johnny Rockets!
Check out that landmark in background! Pshh. Not the gold-domed capitol…Johnny Rockets!

We had a press conference at 11:15 with WSB’s Lori Geary, who has been a champion of the cause, presenting it in an appropriate way and making every effort to make key issues clear. For example, we are still trying to make sure people understand that kids aren’t smoking joints. It is an oil form, high in CBD, low in THC — though I do want to be clear that THC has medicinal benefits as well. But since it is the psychoactive component, people are more afraid of it than the CBD. At any rate, the kids aren’t getting stoned.

WSB's Lori Geary speaking with affected families.
WSB’s Lori Geary speaking with affected families.

Several parents spoke about their kids: Shannon Cloud, whose daughter has Dravet syndrome; Janea Cox whose daughter has LGS and for whom the bill is named (Haleigh’s Hope); Chris Clark, whose wife and child have relocated for treatment; Jonathan Jiles, whose son was born with Ohtahara syndrome; and Aaron Klepinger, who flew in from Colorado to speak about his son’s successful treatment in Colorado and how they want to return to their Georgia home. FYI: Haleigh is in PICU and really struggling. They are looking at having to relocate a medically fragile child to Colorado when she becomes stable enough for a life flight. Fundraising efforts have started here.

Aaron Klepinger clutching a photo of his son Hunter.
Aaron Klepinger clutching a photo of his son Hunter.
Shannon Cloud addressing the need for medical cannabis.
Shannon Cloud addressing the need for medical cannabis.

I’ll keep you updated as it progresses through the process. Here is the news clip (you can see me and Connor in the background several times).

I’ll close with a few more photos from the capitol:


Wendi Scheck with son Hudson and Rep. Allen Peake (and service dog Denali).
Wendi Scheck with son Hudson and Rep. Allen Peake (and service dog Denali).
It's hard to tell a delighted toddler that you aren't supposed to pet service dogs :)
It’s hard to tell a delighted toddler that you aren’t supposed to pet service dogs 🙂


For anyone who thought hell would have to freeze over for Georgia to move towards legalizing medical cannabis…

Haleigh Cox with Rep. Peake
Haleigh Cox with Rep. Peake

You were sort of close. Atlanta froze over creating a hell of sorts yesterday when Rep. Allen Peake dropped the bill HB 885 Haleigh’s Hope, named for Haleigh Cox, diagnosed with Lennox-Gastaut syndrome, who is still in the hospital. It now needs to go through committee in the house and if it passes, then get passed to the senate, and at that point will go to Governor Deal to be signed. Some basic details of the current version are:

The bill will be tightly restricted and very regulated, managed by a doctor, administered orally in oil or capsule form. Seizure disorders have been added to an existing law that includes cancer and glaucoma. (A previous 1980 law had allowed for controlled use for cancer and glaucoma, but due to stipulations on how it could be obtained, never actually benefitted anyone because they couldn’t get it.)

I’m very excited to see progress being made that could potentially benefit Connor and so many others. I’m anxious to find out the nitty gritty on exactly how and when we will be able to obtain it if passed.

Of course, this bill is met with controversy, and I don’t even mean the anti-any legalization whatsoever groups. People who want to treat medical conditions not expressly named in this bill are expressing their dismay. Another point of contention is the limited allowance of THC-where exactly we stand on that is unclear. The CBD oils are very high in CBD with very low THC and have great medicinal value. Since THC is the psychoactive component, this aspect gives great comfort to people who would otherwise oppose it. However, THC also has medicinal benefits. Some of the people being treated with CBD oil are supplementing with THC when the CBD oil alone is not enough. I don’t want to get too technical because this has been a learn-as I-go-along type of experience, and I do not want to unintentionally spread misinformation.

Haleigh's Hope-courtesy Corey Lowe
Haleigh’s Hope-courtesy Corey Lowe

But this is a start. I’m hoping we are headed toward access to all components that could help my child. If you are dealing with a medical issue that would benefit from cannabis, I highly recommend you contact your legislators with your story. I hope we are on a path to this being an option for everyone that needs it. Georgia is an exceptionally conservative state that just let adults make the choice to buy alcohol on Sundays and cannabis has been demonized incorrectly for decades. Miracles don’t happen overnight, even if they should. Getting this far required the persistence of some incredible parents that knocked on doors at the capitol and wouldn’t take no for an answer.

Atlanta’s Snowmageddon (Snowpocalypse? Can’t decide) that hit yesterday and had kids and teachers stuck at school and on buses, people sleeping in Home Depots, shelters, gas stations, strangers’ homes and in their cars on highways, while other people had their 20 minute commutes turn to nine hours only to ditch their cars and trek home on foot dominated the news. However, there was a front-page story about the bill in the Atlanta Journal & Constitution that continued to page A9 featuring none other than the little man himself.


I also ask that you please watch and share this video about why this bill is so important.

The fight for medical cannabis in Georgia continues…

I am but a mere soul in the mud trying to help push the truck, but credit for the amazing momentum of the last few weeks goes to a group of parents at the steering wheel. I have had the pleasure of getting to know some of them if only online. For every e-mail I send or person I try to persuade, they have done 100x that with face-to-face meetings, contacts to the media and bringing legislators that were once wary over the line to full support.

Rep. Peake is working on legislation right now, convinced after meeting Haleigh Cox face-to-face in the hospital after she stopped breathing and had to be admitted.

Haleigh Cox with Rep. Peake
Haleigh Cox with Rep. Peake

Please also check out Kason Jiles’ story. Connor was once in that position, stuck in the NICU with dozens of seizures every day.

All of this has made realize how lucky we are. Connor’s seizures are not good and are certainly a factor in his physical and speech delays — and there is always the fear of SUDEP or status seizures, but some of these parents are literally trying to save their kids’ lives. Not long-term — I mean NOW. As in they face very immediate life and death issues–each day they wait is a life time. Where we have managed to get Connor down to roughly three clinical seizures a day, their kids are seizing constantly. They have exhausted traditional options. FDA-approved meds have FAILED, the ketogenic diet has FAILED, the VNS implant has FAILED, brain surgery has FAILED or is not an option. Next month we start Connor on the ketogenic diet. In many ways I feel like that is our last option. Sure there are more meds we could try, but we’ve already tried seven.

“Yet less than 1% of patients who failed to respond to three anti-seizure drug regimens achieved adequate seizure control on subsequent drug treatments even though some were treated with as many as nine different drugs or drug combinations.”

I am very optimistic about the diet. I’ve done some tweaking to his diet in preparation for the real thing and I really think it has helped. His seizures are mostly 30 seconds and under and now only seem to happen upon waking in the morning and at nap time. But keto may not stop them 100 percent or it may not work forever — not to mention the incredible difficulty and lack of nutrition on the diet. Connor deserves every possible option on the table. All of these kids do.

Many people remain locked in an image of bongs and rolling joints. This is not how children would take this medication. It is an oil that they would take under their tongue and with food. They don’t stumble around high. There are other forms as well, but that is the one I am most familiar with. No child is going to be smoking.

President Jerry Luquire of the Georgia Christian Coalition has spoken against us with the media and to his followers. A number of parents began to e-mail and comment on their Facebook page pleading to be heard. All of our (polite) comments were deleted from the page and several people were blocked from commenting further. This was one of his responses to a parent. I have in no way altered it other than to remove the mom and child’s name:

Ms [name removed to protect her privacy], thank you for writing me on behalf of [child].

As a husnad, father and grandfather of children who are free of medical problems,
I feel guilty somehow that I have been so blessed when you and others face such
unspeakable pain. I am truly sorry. Our prayers join yours and others that those
who can change the course of medical treatment will do so.

[Mom] if the law were changed in Georgia tomorrow, there would be no
relief to situations where cannabis is required. The change that will help your son
must be made at the federal level. There is no action we can take to bring about
that change by enacting a permissive law in Georgia.

I was offered this observation Monday by a parent who said his son was doing
fine with a marijuana treatment, using his term, and he felt he no more broke the
law by buying it illegally than if Georgia make it ok, but the feds did not and he bought it

You make a compelling case for federal law change…please do not give up.

In Christian compassion

Jerry Luquire 706 366 8298 You are free to share this

response as you see fit.Co, thank you for writing me on behalf of [child].

Interesting. So his argument is the conflict of state laws and federal laws. This to him is more important than saving lives. Not to mention, we have already seen that the feds are making the choice not to interfere in other states. So does this mean he would support us if the feds wanted to make a change? I can’t help but suspect he would not. But this is a great way to oppose a potentially life-saving/changing medication and try not to look like a bad guy. Luquire made quite a name for himself battling Sunday alcohol sales and trying to prevent it from going to a vote by citizens, even though this was a local county and city issue. So I find this quote from a 2011 news article very interesting:

“I hate government control of people, their business and thoughts — most of all their thoughts.” -Jerry Luquire

To my readers that haven’t yet done so, please contact your legislators and Governor Deal letting them know that you want sick people to have access to medical cannabis. This is being done at the state level, so we’re not asking you to contact your representatives in D.C., but the ones right here making Georgia law.

Contact Governor Deal here.

If you aren’t sure who your local legislators are, find out here.

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At the end of my previous post, I included an open letter written by one of the parents leading this cause. He includes hard data on how his son has been helped since they were left with no choice but to leave their family and go to Colorado. If you missed it, please check it out.