Category Archives: Current Events

Why is Sen. Ben Watson turning his back on Georgia’s cannabis patients?

Let’s start with the TL;DR. If you read no further, check out this video created by a supporter.

I’m over it. My enthusiasm and January gung ho attitude of years past are long gone. 2017 is the fourth legislative session in which we will continue to fight for medical cannabis in Georgia. I’ll be honest. Before my son’s seizures and getting involved in cannabis advocacy, I didn’t pay much attention to state politics. Now that I do, the corruption and hypocrisy constantly makes me sick.

This year is already shaping up to be the same old garbage. The support we have comes from the House, while the Senate schemes to screw over sick people. Some names are no surprise. Sen. Renee Unterman  (R, Buford) has been at it since this all began, so when Senate Bill 16 dropped, a bill that aims to lower the amount of THC permitted in Georgia from 5% to 3%, taking away options from patients, the only surprise to me was that she was a co-sponsor, rather than the lead.

The lead sponsor still came as a bit of a surprise, though. Doctor and Senator Ben Watson (R, Savannah) was a representative when all this started. He was very supportive of the original bills introduced by Allen Peake. He was even interviewed in his medical office, wearing his white coat, for the documentary Growing Hope: Georgia’s Fight for Cannabis Oil. In fact, check this video out at the 2:08 mark. (Side note: That’s my adorable kiddo at 2:02).

Yes, you heard him right. He said, “To say that marijuana, or THC, or cannabidiol has no medicinal value, I think, is just immoral.”

And yet, now he leads the charge to decrease the amount of THC permitted by people who hold a Georgia cannabis card? It’s not enough that the Governor has used the Senate to block cultivation and families have to travel out-of-state to get the higher THC products, now he wants to take away their rights to possess and use it in the state of Georgia?

Sebastien Cotte is father to Jagger who has mitochondrial disease, and Sebastien has been a huge advocate from the start. He has already been down to the Gold Dome and here is part of his Facebook post about his first day of advocacy in 2017. This was his account of a conversation he had with Watson.

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Ummm… Georgia has an opioid epidemic going on. Are you being serious right now, Senator?

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Oh, by the way, the Georgia senate has also passed a law limiting the number of opioid treatment clinics while they set up a committee to investigate why Georgia has the largest number of clinics in the region.

Katie McKoy, a fellow special needs mom of three, dug these up for me within five minutes of my posting on Facebook about Sebastien’s conversation. Let’s stroll down memory lane and remember when we had Watson’s support.

http://news.wabe.org/post/doctors-can-sign-patients-medical-marijuana-registry

https://www.savannahbusinessjournal.com/news-categories/featured-columnists/4746-apr-21-columnist-state-senator-ben-watson-state-house-report-wrap-up.html

http://gareport.com/story/2015/03/24/senate-passes-medical-marijuana-bill/

So what changed? He supported us in the House of Representatives, where the powers that be are behind us. But then he moves to the Senate, where Casey Cagle and Renee Unterman routinely try to stick it to sick people, likely at the behest of Governor Nathan Deal (who has proven that he’s only interested in photo ops with sick kids, not actually helping them) and suddenly he’s taking the lead on moving Georgia’s very limited program backward.

Five out of six of the senators who signed as sponsors of this new bill previously voted to pass our current (thoroughly gutted by the senate and governor) medical cannabis bill. Why wasn’t that gut job enough? Now that Rep. Allen Peake is introducing two new bills, one to expand the protected medical conditions, and another to put medical cannabis on the ballot for citizens to decide, I guess the senate needed leverage to shut those down. It’s sick. Nothing but games for these elected individuals. And FYI, whereas Peake’s bill adds several medical conditions to be permitted cannabis use, the senate is only adding autism.

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The sponsors of SB 16 are:

Ben Watson (R, Savannah, District 1)  404-656-7880    ben.watson@senate.ga.gov

Renee Unterman (R, Buford, District 45)  404-463-1368  renee.unterman@senate.ga.gov   (Votes in favor, just tries to strangle it behind the scenes).

In 2014, she admitted to WSB’s Lori Geary she was holding the bill hostage until her bill was heard.She also said, “These parents don’t understand how the General Assembly works but this building is nothing but politics.”

Francis Millar (R, Dunwoody, District 40) 404-463-2260  francis.millar@senate.ga.gov

2014:

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2016:

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Greg Kirk (R, Americus, District 13)  404-463-5258   greg.kirk@senate.ga.gov  (When in-state cultivation was proposed said he wasn’t sure we should go down that road).

Nan Orrock (D, Atlanta, District 36)  404-463-8054  nan.orrock@senate.ga.gov (Has been vocally supportive on the floor, so I’m not sure why she’s co-sponsoring this).

Chuck Hufstetler  (R, Rome, District 52)  404-656-0034  chuck.hufstetler@senate.ga.gov  (Hufstetler is the only sponsor who has never voted in favor of medical cannabis. He likens Colorado to the “Wild West.” He’d feel better if the FDA approved it — the same FDA that approved pure hydrocodone, an opioid five to 10 times the strength of Vicodin).

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Georgia Medical Cannabis Commission Votes Against Recommending In-State Cultivation

I’m gonna keep this short and sweet. For some background you can read this if you need it. Today the Georgia Medical Cannabis Commission met to decide on the final recommendations for the state and the medical cannabis program. The vote was 11-5 against recommending in-state cultivation, which would keep medicine more affordable for patients and not force them to break federal law obtaining meds.

A recent poll found that 84 percent of Georgians support expansion of the law and in-state grow.12309486_10153181418405496_6836359295388926619_o

This is the breakdown of the vote. Please note which side most of the doctors are on versus lackeys for Governor Deal, who plans to block expansion.

Yes: 
Rep. Allen Peake
Dr. Mandy Reece (pharmacist)
Dr. Cynthia Wetmore (oncologist and head of research for Emory and Children’s Healthcare)
Dr. Yong Park (pediatric neurologist)
Dr. Mark Murphy (gastroenterologist)
No: 
Dr. Alice House (head of state medical board)
Brian Rickman (district attorney who was recent appointed judge by Gov Deal)
Dr. Brenda Fitzgerald (commissioner of dept of public health)
Senator Butch Miller (floor leader for Gov Deal)
Rep. Katie Dempsey (Rome)
Ryan Teague (exec counsel to Gov Deal)
Chief Stacey Cotton (police)
Sheriff Gary Gulledge
Rick Allen (Director of GA Drugs and Narcotics)
Vernon Keenan (head of GBI)
Gary Black via proxy vote (commissioner of agriculture).

I’d also like to thank Pastor Mike Griffin, head of the Georgia Baptist Convention who spoke at the hearing and said that although he has prayed with families who need this healing, it should not be passed. Basically his fear of recreational use (which is not on the table) is more important than the welfare of sick people. He can be reached at mgriffin@gabaptist.org.

Yep. Legislators and law enforcement are apparently more suited to making medical decisions than doctors and patients.  Read it and weep, Georgia. No seriously, you should weep. This state has serious issues.

They used the federal government as an excuse. Georgia. Does Georgia have a track record of bowing to the federal government? Apparently, only when it suits them.

There will still be legislation introduced to try and expand the program to include more conditions and cultivation, but overcoming dirty Georgia politics to make it happen is not going to be easy.

Governor Nathan Deal
Phone: 404-656-1776
Email: georgia.governor@gov.state.ga.us

Find your state representatives here:

http://openstates.org/find_your_legislator/

Governor Deal plans to block medical cannabis expansion.

I’m experiencing a serious feeling of deja vu. Except last year Governor Nathan Deal waited until after Christmas to drop the bomb on the sick and suffering of Georgia, along with their families. Happy holidays, citizens. You don’t matter.

Let’s do a brief recap. In early 2014, a parent lobby rose up, with the help of Rep. Allen Peake of Macon, to try and pass HB 885/Haleigh’s Hope Act to help people with epilepsy access cannabis oil. It was a very limited law, but by the time it hit the floor on the final day of session, it had been whittled down to nothing but immunity for possession of the oil. Political games were played, namely by Sen. Renee Unterman of Buford and Lt. Gov. Casey Cagle (who has his sights set on the Governor’s seat), and the bill died, much to the devastation of the families. As the clock ticked toward midnight, several families ran to Deal’s office to beg him to intervene, to demand that the bill get a vote. He wouldn’t come out of his office. More families moved to Colorado in desperation. And three children I knew through this effort would pass away as the fight continued.

Over the course of the year, Peake led a commission to explore the idea further and how to make it work in Georgia. They concluded in December of 2014. Everyone was excited at the prospect of a bill that would include more conditions and allow a higher ratio of THC to CBD  (necessary for many people for whom CBD alone doesn’t cut it). It was also supposed to allow cultivation and growth in the state of Georgia as bringing it over state lines is federally illegal. Before the session even started, Deal made it clear growing was off the table. It was another devastating blow, however, HB 1 did pass with several eligible conditions. Residents could apply for a card that allowed them to possess cannabis oil with up to 5 percent THC.

Let me quickly say, I am for full medical marijuana. Legislators should not be able to dictate what conditions or stages of disease are eligible. They are NOT doctors, except in rare instances. But this is the sad hand we are dealt in Georgia. Too many elected officials that think it is their job to parent rather than represent the will of the people, who are largely in favor of medical cannabis. The goal for 2016 was to hopefully expand conditions and allow growing so that federal law doesn’t have to be broken to obtain it.

The signing of HB1 in 2015 was quite the production with the Governor’s office. He even shed (crocodile) tears as he signed the bill to help the families his staff strategically placed around him for the camera op. It was a performance worthy of an Academy Award.

Over the course of the past year, taxpayers have sponsored another committee to explore options for growing in Georgia. They have not completed their work or presented the final findings to Deal, however, yesterday he came out and said he will not support growing in 2016 either, even though the whole point of the committee he appointed was to make that happen.

He says law enforcement doesn’t want it. Well, last time I checked, that isn’t the branch of government that writes the laws.

He also says that the 300 people who have registered aren’t enough to be worth the cost of the program. Hear that, fellow card holders? Our loved ones aren’t worth it. He fails to recognize that many people can’t register because the restricted legislation doesn’t include their conditions, or if it does, they have to be end stage (yeah, you aren’t dying enough yet), and many need more THC than is allowed by the current law. Several patients are also encountering the issue of their doctor refusing to sign off simply because they oppose the idea or lack education about how it can benefit various conditions.

I find it funny that he considers the cost/benefit ratio not good enough to have in-state grow, but he supported pharmaceutical trials that cost the state an extraordinary amount of money, and have taken forever to benefit anyone at all.

He never intended to listen to either committee. But he was happy to waste your tax money putting on a show of fake compassion.

There are two things I really hate about epilepsy. The first is obviously what it has done and continues to do to my child, even though he has shown extraordinary improvement on CBD oil.

The second is how it has left me feeling about my state and my country. Getting involved in corrupt politics has been so incredibly disheartening. I was happier in the dark, but there is no going back. I just hope there is a light at the end of the tunnel in the form of a majority that can override Deal’s veto. But that road looks a lot like a Georgia road in an episode of The Walking Dead. We need everyone to speak up. Please call and email your state senators, representatives and, of course, the governor. Let him know you are tired of him ignoring the will of the people.

This site will help you find out who your state officials are:

http://openstates.org/find_your_legislator/

Governor Deal, this is just one the many faces you are hurting. Look at him. He is a person. He is a Georgia resident. He is loved. Now do your job.

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For more on what happened last year, read this.

 

 

 

Tardy thoughts on the Superbowl, dadvertising, and that stupid fire dress.

Let’s start with the game. It gets my standard review. Didn’t care. Didn’t watch it. Well, except for that fight at the end. That was kind of entertaining.  I hate football. YES! I SAID IT! I live in the southeast where college football is king and I neither care about SEC football (I mean, I want the Dawgs to win, I just don’t need to watch it happen) nor do I care about the NFL.

As for the half time show — thank you, Missy Elliott. It should have been your half time show. Not that I hate Katy Perry or anything, but Cinna was right there on stage with you, and that was the best fire dress you could come up with?!

I always watch for the commercials, specifically the humorous ones, although it seems like those are fewer every year. Or maybe I just thought they were funny back when I bothered to go to Superbowl parties and started drinking at noon. Of course the humorous ones were always mixed in there with the stereotypical scantily clad, partying women selling booze.

This year was an interesting departure. Not a lot of naked chicks, but a lot of kids and dad commercials. It’s funny. If that change had been made just a few years ago, I would have thought, great, wonderful! About time. And then I would have gone on with my life. But watching the commercials, even as a mom was a strange experience.

Let’s start with THAT Nationwide commercial. I’ll give you props, Nationwide. You got the nation’s attention. You collectively sucked the breath out of every room that had a TV tuned to the game. Adorable kid, charming and quirky depictions of childhood imagination; we fell in love with this little boy in 15 seconds. Then you killed him. We were treated to visuals of overflowing bathtubs, cabinets opened to containers of poison, and a flat screen television smashed on the floor. I conducted a very unscientific poll and have gathered that 63 percent of viewers responded with What the f—! 32 percent responded with mouths gaping open. And the remaining 5 percent were lucky enough to be in the bathroom.

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If it saves even one kid, it was worth it. But as a parent that is faced with  the reality of childhood mortality every day, I sure didn’t like it or want to see it when I just wanted laugh at idiots doing dumb crap to get Miller Lite or Doritos. Connor does not have any life threatening complications, but seizures are always dangerous and unpredictable. And I know so many people via my involvement in cannabis legislation that are dealing with far more dire situations than I am. The TSC community has lost two teenagers recently, and I’m going to be selfish and say I didn’t want to think about that during the stupid Super Bowl.

That Dove ad with a sequence of young children hitting milestones and calling out to dad. Dad. Daaad! Sweet commercial. I was a little confused by the Cats in the Cradle Nissan ad. Seemed depressing. Here, buy a Nissan and drive away from your family! Not everyone interpreted it that way, but if you are familiar with the song, it was kind of hard to view the commercial in an uplifting manner. But at least dad was there to pick up his teen son at the end. Toyota depicted a dad raising his daughter and tearfully dropping her off at the end to her military deployment.

This shift in advertising should have been a welcome change to me, but it sort of wasn’t. Don’t get me wrong. I’m no fan of naked chicks spraying themselves with Coors Light. I’m not saying this a bad change. I just realized how different the experience of these commercials can be for some people in the special needs community, and especially for those who have lost or are facing losing a child.

Watching kids hit milestones and do things they can’t do yet, or may never do was extraordinarily painful for a LOT of parents, as I realized quickly from my Facebook feed. I know I felt a little funny, and I wasn’t even the target of the advertising. The Dove commercial with kids calling out for Dad…as I’m desperately waiting for Connor to say his first word made me stop and pause in the kitchen as I poured my drink. I read more than one thread online of parents that had clearly been taken out of the moment of enjoyment and festiveness by these ads. To be clear, no one was critical of the ads, it was just interesting to realize how much my own perspective has changed in the last three years.

As for me, next year I’ll probably watch Netflix upstairs, perhaps Nationwide Presents: The Never Ending Story 4: More About the Horse that Drowned in the First One. I’ll watch the funny commercials online later.

 

Another blogger talking about the #IceBucketChallenge! *groan heard worldwide

Too bad. I’m gonna write about it anyway. I’m terribly jealous of it, you see. What I wouldn’t give  for this kind of exposure for TSC. But what it has done for the ALS Association is amazing. From July 29 to August 21, the ALS Association  received $41.8 million in donations, compared to just $2.1 million during the same time period last year.

Amyotrophic lateral sclerosis (ALS) is a progressive neurodegenerative disease that affects nerve cells in the brain and the spinal cord. Motor neurons reach from the brain to the spinal cord and from the spinal cord to the muscles throughout the body. The progressive degeneration of the motor neurons in ALS eventually leads to their death. When the motor neurons  die, the ability of the brain to initiate and control muscle movement is lost. With voluntary muscle action progressively affected, patients in the later stages of the disease may become totally paralyzed.”

Despite how horrific the disease is and the incredible success of the ice bucket challenge, the amount of criticism is incredible.

1. It’s a waste of water (everyone who said this better be taking three-minute showers).

2. Not everyone who does it is actually donating (okay, I agree that’s lame, but maybe, just maybe, they challenged someone who challenged someone who wrote a big fat check. And at this point if you haven’t at least heard of ALS, you are living under a rock).

3. People aren’t including the link or contact info to donate, or any factual information about ALS (ideally, yes people should make it as easy as possible to donate. If you haven’t done it yet, please include the link to ALSA.org)

4. Participants just want attention. JUST DONATE AND SHUT UP ABOUT IT.

Yep, number four is the one I want to address. Wouldn’t that be wonderful? Wouldn’t it be delightful if people just woke up and said, hey, I think I’ll donate to charity today! Yes, of course that does happen sometimes, but the reality is that it often takes a big disaster, media coverage, huge event, celebrity endorsement, or a diagnosis of a friend or family member.

Some people think the ice bucket challenge is nothing but people wanting attention when they should just quietly donate and say nothing. I might have made that cynical statement myself a few years ago. But I know something now that I didn’t know back then. It is extraordinarily difficult to get people to donate to your cause when you don’t have the NFL wearing your awareness color for a month or celebrities talking you up on late night television. And I think a lot of people criticizing it have no idea what it is like to try and draw attention to a charity that is helping your child, spouse, family or friend.

Those of us dealing with lesser known disorders are begging for support on social media. And if some “annoying trend” of dumping ice water on your head is what does it, so be it. We don’t have time to worry about whether our campaign is “like totally annoying” or “trendy” or “stupid.” What we know is that someone we love is hurting and we want relief for them. As I stated on Facebook (and was met with WAY too much enthusiasm by my friends for seeing me covered in crap) I would roll around in horse poop if it would bring in the donations. Just imagine what the critics would say about that. And then I would show those critics a video of Connor seizing or a picture of his two seizure-related black eyes.

If a silly gimmick brings in the money, so be it. I’d rather people donate because of a fun challenge than because they have received the heart-breaking news that they or a loved one have received a terrible diagnosis.

The first TSC walk we participated in was a couple months after Connor was born. He had just gotten out of NICU. We raised six times the goal. In the two years since, we have only raised about a third of that amount each year. I don’t say that to be critical. If you have ever donated at any point, I am extremely grateful and don’t consider anyone obligated. But I share this to make the point that it takes something big to get the donations. Connor’s new diagnosis was the big event that triggered such generosity in 2012. But now it’s just a normal, run-of the mill, annual activity of mine to raise money for the walk that no longer garners the same degree of attention. Who knows; maybe I really will have to roll around on a stable floor to get the attention I got the first year. That’s just how it goes when fundraising for charity. I mean, why do charities do walks, 5ks, banquets, or sell products? Why don’t people just donate! Because we’re human. We like t-shirts, food and Girl Scout cookies. And now — dumping ice water on our heads.

Why does something bad have to happen to inspire people? Is it such a terrible thing that people are donating because of something light-hearted and fun?

And to my friends that were challenged and opted to do it on behalf of the TS Alliance, I thank you from the bottom of my heart.

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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.

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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.

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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.

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The Oliver family

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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.

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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.

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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.

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Since starting on Haleigh’s Hope, Corey tells me Victoria has had an 80 percent reduction in seizures. From several a day to this:

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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.”

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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

 

Rep. John Fleming of Louisiana is a perfect example of what’s wrong in D.C.

Unknown-1Representative John Fleming of the fourth district in Louisiana is extremely opposed to medical cannabis. While he does see a place for pharmaceutical versions such as GW Pharma’s Epidiolex, marijuana scare tactics appear to be a major part of his agenda and he has no interest in helping desperate parents save their seizing kids. He has no problem with dying children waiting while researchers fight through the tangle of red tape that is marijuana research and the lengthy process that is FDA clinical trials. Oh, those trials have been fast tracked and we can get into studies (sound familiar, Rep. Sharon Cooper?). Never mind that most of us can’t get into those studies. Connor doesn’t qualify with TSC, and even parents who have children with the requisite syndromes are unable to find openings. FDA fast tracking just means they shave some years off the years it will still take to approve it (Connor’s most effective med, vigabatrin, had its first clinical trials in 1979. It was approved in the States in 2009, years after other countries made it available).

Rep. Fleming is very, very worried about recreational use. Our children are nothing but Trojan Horses (his words) used by those who want full legalization for recreational purposes. He is so worried about recreational use and the fear that someone might find a way to use medical cannabis for fun, that he is willing to sacrifice the lives of sick and dying children. He is not interested in hearing our stories of our children that need it or those that are already benefitting from high CBD strains and THCA in legal states. He voted against the recent Rohrbacher amendment to prevent funding the DOJ for raiding state medical marijuana programs. In fact, if you try to tell him about your child on his Facebook page, he will delete it. He can’t have the public know who he’s hurting with his over-the-top antics.

IMG_0964It’s his Facebook page that brought him to my attention, as well as to the attention of some other parents dealing with seizure disorders. He had posted about a speech he gave on the dangers of marijuana so several of us posted on the thread. Many of our comments got deleted. Several of us are blocked from commenting further. I will say, in the interest of full disclosure, that perhaps I implied I had doubts about his abilities as a medical doctor since I came across an article about how he blocked doctors from being able to discuss the medical marijuana option with veterans because he didn’t want them exposed to an addictive, harmful substance. Yet you never see him express any concerns about the highly addictive, dangerous nature of many pharmaceuticals. Prescription pain pills are some of the most highly abused drugs, but that doesn’t concern him. But I don’t think I got deleted and banned because I might have come off as insulting (there was no swearing or name calling). I think I got deleted because I talked about my kid and about how dangerous one of his prescriptions is. (And to be clear, I am not part of the anti-pharmaceutical movement, nor do I believe that marijuana is a cure for everything or that it will work for everyone. I think pharmaceuticals have their place alongside options like cannabis. I just ask that my zip code not determine my access).

I’m not the only one. Several people who talked about their kids got deleted. Interestingly, he started debating with one of the parents–also a doctor –and did not delete or block him. However, he DID delete a link to a YouTube video that this father had made about his daughter and medical cannabis to educate the public. Interesting. Rep. Fleming is so passionate about Facebook page maintenance that he even stayed up until midnight on a Friday to edit, delete, and condescend. Yes, condescend. You may wonder why I find this particular representative so interesting when he is obviously not the only one who opposes helping our kids. Well, though I was blocked, I still found myself quite fascinated poring through his page. It became clear that his page serves no purpose but to rile people up and be divisive. It’s not even about whether I agree with his views or not; it’s that he clearly uses it as a tool of stirring discontent. Don’t get me wrong. I pretty much expect to see Obama-slamming on most GOP pages, just as there is some over-the-top Obama adoration on the pages of many democrats. But I looked over a few other pages from other parties and none gave me the same disturbing hateful feel that I got from his. I expect these pages to have opinions and criticisms. But what I found from the other ones I looked at is that I could also find positive comments about something they were involved with, or that I didn’t have to scroll far to get an idea of legislation they were involved with. Fleming, on the other hand, just seems to bitch and moan. I know his opinions, but very little of what he’s doing about it. Those posts are good and buried. I’m in no way saying he is the only one who behaves like this, but there are just too many people in Congress for me to look at all the pages. I looked at four other Republicans and four Democrats just to see if this is the norm, but saw nothing like this. All the pages are going to have rude comments from the public…the difference is that most of these other pages don’t seem as heavily moderated in that area. So when you make a point to delete and moderate heavily, you are implicitly showing support for what you leave in view.

What I found especially interesting is the way he chooses to interact as an elected official. I’m sorry, but our representatives should set an example of decorum. You are going to have rude comments on social media, and there is a line people can cross where you are well within your rights to delete. But he’s deleting to twist the story and those that get to stay, but disagree with him, get a condescending attitude the likes of which I’ve never seen.

Here are some screen shots from the medical cannabis discussion with parent of sick children. He keeps talking about legalization, though many commenters are focused on rescheduling. He’s also completely in the dark it would seem about how damaging the schedule 1 status of marijuana is on research. But he won’t be told otherwise!

This flat out lie:

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And excerpts from last weekend’s marijuana discussion in which it was necessary to talk down to and insult parents desperate to save their kids. I’d tell you to check out his page to get the full conversation, but alas he is forever editing and deleting. Who know what’s missing and edited by now.

Excerpts with one dad.

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Excerpts with another dad.

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Please keep up with developments? Really? By the way this dad is the doctor I mentioned earlier. The other dad’s response to Fleming’s endless egocentrism.

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Once again, Dr. Fleming, learn the difference between rescheduling and legalization.

And the one I take very personally because this mom has a child battling the same disorder. (Update: Since I first posted this, Rep. Fleming has removed all the comments by this mother, yet left his own responses).

IMG_1133 IMG_1134 IMG_1135 IMG_1136 IMG_1137 IMG_1138 IMG_1139 IMG_1140 IMG_1141 IMG_1142I simply must interject here…They will just GIVE US the medication if our kid is going to die? Just like that. Anybody remember Josh Hardy who made the news last March? He is seven. The pharmaceutical company denied him compassionate use. They didn’t reverse their stance until the public pressure became too overwhelming. Rep. Fleming truly lives in his own world–a world where pharmaceutical companies give people drugs when we say “pretty please with sugar on top.”
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Not one ounce of compassion in that entire thread.

For the love of God, why can this man not make the distinction between legalization and rescheduling?

Yeah, pretty sure we explained that (in now deleted comments) that this wasn’t an option for everybody and some kids will be dead before Epidiolex goes to market. Not to mention, Epidiolex is one particular formulation. It’s not necessarily the same as what some of the kids are responding to. It may work for some, but others will need whole plant medicine.

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Like I said, he loves to delete.

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So some of the parents got to stay and debate with him. I guess those of us that were deleted didn’t have anything constructive to say. So in the interest of helping others, I’m going to share some screenshots I took from other threads on different topics so that you will know what Rep. Fleming considers positive contributions to the discussion should you wish to engage without being banned. And please know that in an older thread, he has stated that cursing and name calling won’t be tolerated. But I guess that’s only if it’s about him.

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Though some who don’t know me may assume I’m targeting him because of his party, that is absolutely not the case. If he had come to my attention as a Democrat behaving in this manner–I’d say the same (I float somewhere in the middle annoyed by extremes on both ends). He’s a perfect example of what we don’t need in D.C. making decisions for people. Someone who makes it very clear that he can’t and won’t work with his colleagues unless they tow his line and won’t listen to the other side of the story. He’s there to represent his own interests. I actually found in Georgia that the bipartisan support for our kids was amazing.

But perhaps I’m being unfair. He does get his information from reputable sources.

john_fleming_screengrabPlus, Rep. Fleming has but this one request.

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Of course, don’t expect HIM to abide by it.

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He really can do it all. He gives grammar lessons.

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He’s a Biblical scholar.

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A civics professor.

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Hmmm…be a statesman…good point.
IMG_1081His response:

IMG_1082Historian.
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Economics professor.IMG_1078

He gets by with a little help from his friends.IMG_1077

I just wish he cared as much about the kids that have been born as he does the ones that are in utero.

Maybe it’s time Dr. Fleming goes home to Lousiana and focuses on his 36 Subway sandwich shops in North Louisiana.

We all have our beliefs and biases, and hey, I don’t necessarily like all the people being referenced here either, but if this is how you think a United States representative should conduct himself, you need to reassess.

 

Please check out this YouTube response some parents put together for him.