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Going back to where we last left off…
With Christina's neurologist last words playing in Anneliese's mind, "Do you believe in God, because you have tried everything that conventional medicine can do, maybe it's just time to believe in God." Anneliese was feeling lost. She began posting to facebook what she was told, and that is when friends began sending her links to articles about children who were successfully being treated with cannabis.
Soon after, her children were watching Discovery Channel's "Weed Wars" and called her in to see a father who was administering his epileptic son with cannabis. "I was floored!" Anneliese said.
Right away Anneliese started researching to see how she could obtain the high CBD, low THC compound for her daughter. "I called Colorado to find out that there was a year waiting list, so I started looking for people who could get it for me," she says.
Five days after Christina tried this new medical approach for the first time the seizures stopped. 10 days later she was sitting up, 20 days later she was eating, 30 days later she was trying to scoot around and walk. "She did have a couple seizures at the 30 day mark, and then we changed things around a little, and she made it to 60 days with only 1 seizure," Anneleise says. "Her developmental gains were astounding; she was playing with toys we hadn't seen her play with before. She was very alert. She was engaging and interacting with us. It was wonderful! Then I ran out, and I didn't want to put those that were helping us a risk by asking them to send more, so we just stopped."
"It was around this time that we learned of Medical Necessity in the state of FL. Christina's doctor wrote a defense in advance in case anyone would harass us," Anneliese said. "We hired a lawyer that helps to set up an affirmative, but marijuana in FL is not the same."
Anneliese and Christina in Christina's room. Jacksonville, FL.
"So, it's been a struggle since April, and all the seizures are back", Anneleise says.
Anneliese goes on to say, "I called the Realm of Caring and they suggested several support groups. I never spoke; I just observed. On facebook I saw a post that Steve DeAngelo from Harborside Health Center was going to be in Orlando." Harborside is the California medical cannabis dispensary and wellness center that has been featured on "Weed Wars.
Christina's scar where her pins, screws, and plates were implanted due to having dislocated her hip.
"Also, at that time, there were three mothers who coined their name as 'Cannamoms.' I met them, and I was asked to go on stage with them to talk about Christina," Annelise says.
"Afterwards, Steve said with up most empathy, that he wanted to help. Anneliese added.
Photo courtesy of Anneliese Clark. The medical cannabis oil that was donated to Christina. As of January 13th, Christina has been 45 days seizure free.
In October the four moms and their kids were off to California on a clinical trial for two weeks. Harborside sponsored their hotel and transportation expenses once they arrived.
Some of Harborside's vendors donated oils to the families. Medmen, Care by Design, and the Cannadream Foundation also contributed their expertise. "It was an amazing and humbling experience" Anneliese said.
When we first met, Anneliese and Christina had just come back from California. As of yesterday, I am thrilled to report that since having been back and using the cannabis oil daily, Christina has now been 45 days seizure free, and has gained 8 pounds since October. How amazing is that news!
Anneliese posted on facebook yesterday a video of Christina drinking out of a sippy cup stating, "Christy is now drinking for the first time in 9 months." Christina still is in need of a feeding tube, but her mom goes on to say that even though Christina started eating again 4 weeks ago, she still hadn't been able to drink regularly on her own.
On January 23rd, Christina will undergo surgery to have the pins, screws, and plates in her hips removed that were in-placed last April due to subluxation. When Christina was on medical cannabis the first time, she was so excited, trying to do too much, too fast. Unfortunately her body wasn't ready to handle so much motion causing her to dislocate her hip.
As of January 9th, the official fight for the next two years began for all in need of medical cannabis in the state of Florida. The Secretary of State announced it will be back on the ballot in 2016.
Please stay tune and continue to follow Charlotte's Tangled Web. Our journey is just beginning. Education is key for all of us.
Thank you,
Jennifer Kaczmarek
