{All images on this post are the exclusive property of Jennifer Kaczmarek and are protected under the United States and International Copyright laws. The images may not be reproduced, copied, transmitted or manipulated without the written permission of Jennifer Kaczmarek. Use of any image as the basis for another photographic concept or illustration (digital, artist rendering or alike) is a violation of the United States and International Copyright laws. All images are copyrighted @2016 Jennifer Kaczmarek}
Christina Clark sitting in the family room of her home. Jacksonville, FL
Before I begin, I would like to share some thoughts I was having on the way home. Driving alone is peaceful for me, and it's when I tend to do a lot of reflecting. So many things were going through my mind as I just left this sweet, innocent little girl. The name I gave this project, "Charlotte's Tangled Web" is even more fitting every time I leave someone, because I realize what an even bigger tangled mess it actually is.
Just another rude awakening about how much politics and money rule the world. Does anyone in our ruling government have any true empathy for those that are suffering? If they did, would they be treating them like puppets on a string, literally playing with their lives like they are?
Then there is the public, and the stigma attached to the word marijuana that is held by so many; stubborn, set in their ways with old school mentality, refusing to take a moment to listen to the other side and educate themselves. I, myself, really didn't know anything before, but I knew this was on the table, and I wanted to know more. I'd heard stories of cannabis helping children, and that interested me because I can't stand to hear of children suffering. I'm sharing with you what I'm learning, what my eyes have been opened to. The benefits of what cannabis has not only done for children, but for those of all ages, with all types of afflictions. You have to get in and dig a little if you want to know the truth about things. I'm learning and witnessing the true benefits of cannabis thanks to those who have opened their doors to me. Thank God for Taking Focus, where I have a platform to be free. My goal is just to do good, to do the right thing, and share what I learn with you.
Christina cuddles with Angie, her caregiver, and her dog Bella. Jacksonville, FL
Christina
On Thursday, October 30th, I drove near the border of Jacksonville to meet 10 year old Christina and her mom, Anneliese, for the first time. In 10 short years, Christina has endured more than most will ever in a lifetime. I was there for a few minutes speaking to Anneliese when she then said, "Christina is over there." I hadn't heard a child's voice and was surprised to learn she was just near by sitting on the other side of the couch, but what I soon discovered was that she could not speak.
Christina was diagnosed with epilepsy at 3 months old when she started seizing in her sleep. By the time she was 6 months old she was on 4 medications, 2 of which were for adults. Barely able to hold her head up, they removed 2 medications, and she went 4 months with no seizures. She began babbling, laughing, hugging and kissing, though she couldn't crawl. This began the cycle of her life.
In the first nine years of Christina's life:
- experimented with 16 different AED's - totaling 1000 listed side effects
- seizure types -tonic-clonic, myoclonic, infantile spasms, gelastic, complex partial
- 3 diets
- Stimulator Vagus Nerve was implanted - a device designed to prevent seizures by sending regular, mild pulses of electrical energy to the brain via the vagus nerve. The device is much like a pacemaker.
- 6 neurologists
- 3 countries for stem cells
- 3 brain surgeries
- Feeding tube
- Hip surgery
- 20 hospitalizations
- Relearn to crawl and walk 5 times
- Last neuro visit- suggested they turn to God
- Became a Cannabis Patient
By the time Christina was 11 months old, she started having 110 seizures a day, and was put on a steroid that causes the face to swell, usually referred to as "Moonface". At 15 months old she started the ketogenic diet and went from 110 seizures a day to just 10. Within 4 weeks she began developing again, and was able to crawl, pull up and walk, though until this day, the babbling has never come back.
After some time the diet no longer worked, and seizures took on a new form called tonic-clonic which started a whole new pattern of more meds, more seizures, and more diets.
At age 4, the Stimulator Vagus Nerve was implanted. Annelise said, "It worked only so-so for her."
When she was 5 they decided to go to Germany for stem cell research. They also traveled to Mexico and spend a month in China which Anneliese says was fantastic. "She was doing really well there, but you have to go back every 6 months. The more severe you are the more often you have to undergo the treatment, and we couldn't afford to keep going back."
Anneliese fixing Christina's food that she receives once a day. Her meal will last her 24 hours. Jacksonville, FL.
Anneliese attaches CHristina's feeding tube. Jacksonville, FL.
At age 7, their neuro team suggested brain surgery. Anneliese says, "It didn't stop the seizures, but it did cause them all to go to one side of her brain, which was a success in the respect that the other side of her brain immediately started to develop again. Doctors were able to see metabolic development, so they performed another surgery to try and get all of the parts that were seizing. Unfortunately they didn't get them all. Three days post-op, she started seizing again, and at that point they realized what part they had missed."
Annaliese said, "This was 2012. The brain surgery program was new at FL Hospital in Orlando. They went back in to get what they had missed, and she started to seize again from both sides. Meaning they had spread from the bad side to the good side. In hind sight, we should have stopped."
"Thy preformed a radical type of surgery, a functional hemispherectomy on the bad side, and what is called an MST on the good side. Now we know you can't operate on both sides of the brain at the same time. She seized the day she came out of surgery."
Note: Hemispherectomy involves disconnecting one side of the brain (that is, one cerebral hemisphere) from the rest of the brain. This involves cutting the connections from one hemisphere to the rest of the brain in order that seizures arising in that hemisphere have nowhere to go.
In Multiple Subpial Transection brain seizures may begin in a vital area of the brain such in areas that control movement, feeling, language, and memory. MST stops the seizure impulses by cutting nerve fibers in the outer layers of the brain (gray matter), sparing the vital functions concentrated in the deeper layers of brain tissue (white matter).
Her mom says that her recovery was really slow following the surgery. They were able to get her to scoot around the floor, but she lost complete use of her left arm, and her left leg is very weak. These are known side effects from this type of surgery.
Anneliese goes on to say, "If we stood her up, she would start to walk around, but she was still having seizures. Last year we went back to the doctor to see what else we could do to get rid of the seizures, and we tried more medication. Within three weeks, that one med caused her to stop eating, drinking, and walking."
"We tried the ketogenic diet again but something strange was happening. She became like a wind-up doll. She would start to eat and then slump right over. Tests could not pin point the cause. Tests only showed it was not seizures causing the behavior. She went down hill very quickly at that point, and she stopped peeing and pooping. Last November a feeding tube was put in."
Our neurologist then said to us, "Do you believe in God, because you have tried everything conventional medicine can do for you. Maybe it's time to believe in God."
To be continued….
Introducing Christina to Medical Marijuana - Part II
Anneliese Clark gives her daughter Christina one dose of medical cannabis concentrate infused with coconut oil, by spraying two times into her mouth. Jacksonville, FL
