Yesterday was a pretty big day around here. As you all know (or if you are new around here, you are about to know) our oldest daughter Avagrace, or affectionately known as "Avacake" has a rare and catastrophic form on intractable epilepsy. She battles seizures EVERY. SINGLE. DAY! And she has for many YEARS. We have failed to gain control with over 17 different medications. She is 9 years old and has had five epilepsy-related surgeries. And until recently, there has been no hope for control.
Two things to make this an easier read. If you are a resident of Oklahoma, the very last paragraph gives you specific instructions on what YOU CAN DO! And If you know the ground-breaking life-altering science that is happening in Colorado with the Realm of Caring than feel free to skip ahead to paragraph 6.
|Sisters by diagnosis our friend Zoey!|
But in Colorado, there are people who are fighting for my daughter, and the thousands of other children that they do not even know. You see it all started with a mom, who much like myself, would not give up on her child. She and her husband would travel to different states and research different doctors just to find someone who was willing to fight along side of her. Their names are Matt and Paige Figi. They also were a military family when all of this started, but as many of us know, being a special needs family in the military is not all that the Department of Defense claims it to be. You can read more about their story here.
In their journey to fight for their daughter Charlotte they heard of families around the world that were having success in using Marijuana to treat neurological conditions like epilepsy. And from there, they teamed up with an amazing family, the Stanley's, that was willing to spend countless hours perfecting a strain of marijuana that would have high CBD and very low THC. THC is the part of "weed" that causes the "high." That means, that the strain that they are growing legally in Colorado does not have the property that the Federal Government has deemed illegal. The Stanley's named this strain "Charlottes Web," after their first patient Charlotte Figi, who after just one dose had SEVEN DAYS SEIZURE FREE!
So, you might be asking yourself, why in our country of "freedom" is this natural plant not available to all children who need it? Well, it starts with what we teach our children and our society through drug education, "D.A.R.E" "Red Ribbon Week" and the like. Marijuana in any form is taught to us as causing a plethora of side effects and conditions. The Dare Website says that Marijuana is "addictive, makes it hard to concentrate and learn, makes it hard to sleep, causes colds, coughs, infections, etc." But those statements are simply not true. Yet, all of the medications that are FDA approved for children with intractable epilepsy cause anything from liver damage, breathing difficulties, kidney stones, a likely "fatal rash" known as "Steven Johnson's Syndrome" which Avagrace was very lucky to survive, and psychotic behaviors. One medication that Avagrace was on (and not the one that caused the rash) caused our very happy calm daughter to rip her hair out in fits of rage, confusion, frustration, and feelings that she could not cope with at the tender age of 4.
If you don't believe me, I urge you to watch Dr. Sanjay Gupta, a well-known doctor who has long been revered in this nation, discuss how he was mislead and has since changed his mind on the topic of Marijuana. I have created a playlist on YouTube that has videos about everything that I have mentioned, along with our own videos, a full version of Dr. Sanjay Gupta's "Weed" documentary, the Stanley's Realm of Caring, Charlottes story, and a few other Vlogs that I think are amazing in the education of Epilepsy Awareness!
So, back to our story and our day yesterday.... :-)
If you know me in person or on Facebook, you know that I like to talk and share and advocate. But when I first meet you, when I am in serious situations, I am not a talker. I am also an empathetic person and along with that comes tears. When I went to the capitol yesterday I had no intention nor desire to talk. I absolutely did not want to be in front of CNN cameras, senators, and the leading advocates for Charlottes Web, and start crying. I was very lucky to be at this meeting with some of my most dear friends who are very good at advocating with their spoken words. Near the end of the Q&A/sharing your story session I felt very moved to share our story. Many people had shared why it was absurd for our country to require people who are fighting illnesses that are death sentences, to leave their families, their businesses, their jobs, their animals to travel to another state just so that they could have a chance of survival. But our story is unique and has an added complication (not to say that anything that someone else is going through is any less important or challenging, but you will know what I mean in a moment.)
|Senator Connie Johnson, Virginia and Avagrace Spencer|
In order for our daughter to have a chance at this miracle drug I will have to move to Colorado and stay there without my husband and some of my children. I will not be able to leave with Avagrace because every other state that borders Colorado deems this medicine illegal. If we left Colorado and were apprehended Avagrace would be taken from me and I would go to jail and face charges that could include life imprisonment. Which means that I will only see my extended family if they can travel more than half-way across the country. I will only see my children when my husband was approved for military leave, so that he may bring them to visit us. And I will need to be prepared to deal with the feelings that some of those children will have in regards to me leaving them behind. (Thinking about this more also means no road trips, vacations, or ever leaving the state of Colorado. It is a good thing Colorado is so beautiful!) On top of that we will need to figure out a way to split my husband's enlisted military pay between two households in two states because my days are spent taking care of Avagrace, her therapies, her doctors appointments, her education, and her dozens of daily seizures. I would also be a single mom taking care of the other two or so children that I would be taking with me. And the cherry on top of this amazing sundae of goodness is that I would be considered legally separated from my husband in the military's eyes and would have sacrificed my own life insurance and eventually all of my health insurance as well because I am changing my state of residence and my children's to a state other than the one that is our permanent state of residence and our current state of residence according to his orders. And after being legally separated for X amount of time you are considered divorced. (I realize that this is rather confusing so I will sum it up in one sentence now).
The military will recognize me leaving my husband as a legal separation of our family.
To be honest, I do not remember exactly what I said and I know that it was much more fluid than what is written above. I am also proud to say that I did it without more than a very few un-noticeable tears! Before I shared our story Avagrace had already had a cluster of 15 seizures requiring me to get up, maneuver her chair out of the room in which CNN was filing the speakers, and administer two rounds of rescue meds in the Capitol building's bathroom. Before we left yesterday she had used up the oxygen tank that I had with us (which has never happened before) and she had in total 17 seizures, including 2 GTC's (aka grand mal) and some complex partial-partial seizures among others.
When I raised my hand to share, I was blessed by several individuals that not only had helped me to get Avagrace in and out of the room, find a chair, share their sweater to warm her after her medication was administered, but they then stood by me and called out to Senator Connie Johnson so that I would be heard when dozens of persons from various backgrounds and platforms were vying for her attention.
|Senator Connie Johnson|
talks with Avacake
NOW the most important part!!! If you are in Oklahoma you need to call your state senators right now! If you do not know which senator is yours go to this website and put your zip code in to find out. This is what you need to request. You need to request that Bill 1845 (which has advanced unanimously) to be heard in the senate. Despite its overwhelming support this bill has been refused "floor time" and will not be heard. ALSO, talk to them about Bill 914 which would leave the decision of medical marijuana up to the doctor. In a country that reveres doctors as knowledgeable, amiable, and intelligent; why can doctors not prescribe the medication that their patients need? Finally, Senator Johnson cited House Bill 1441 saying that this is one that needed to be repealed! The senate reconvenes in February. They have the power to pass emergency bills that would allow our children the medication that they need. But none of this will happen without you! Oklahoma residents I urge you to consider this. With over 71% of Oklahoma residents being on board for the use of medical marijuana, why do we have the strictest marijuana laws in the country?