Americans for Safe Access - Nevada Co is hosting a free screening of “Charlotte’s Web” at the Banner Grange on Saturday, April 19 from 2:00 - 5:00pm. The documentary by Dr. Sanjay Gupta follows 5-year-old Charlotte Figi’s epic battle to combat the effects of a devastating type of epilepsy called Dravet’s Syndrome. A panel discussion consisting of parents whose children suffer from catastrophic epilepsy will follow the screening. The following letter is from one of the mothers who will be on the panel.
My name is Gabriella and I am truly blessed to be the mother of the most resilient 5 year old daughter in the world, Scarlett.
Scarlett was born typically developing and began seizing at 5 months. At 6 months she was diagnosed with Catastrophic Epilepsy and she began regressing. She became a little zombie who couldn't hold her head up by herself, smile or even cry. We were told that she had about 6 months left to live and that we should take her home to enjoy what little time we had with her.
I am so grateful to have been given these 5 years with her and hope for many more. Although they have been challenging, I wouldn't take any of it back. Many people ask me if I am angry because Medical Marijuana was the last thing we were told about and the one thing that worked. I simply don't have the energy or time to waste on being angry. She has been through 4 brain surgeries, including having almost half of her brain removed, 19 AED's (anti-epileptic drugs) and none of it stopped her seizures. She is non-verbal, legally blind, tube fed and has Cerebral Palsy.
Last March we literally ran out of options and I took matters into my own hands. We were in a horrible place and had our pediatrician and specialists writing letters in support of our DNR wishes. We were all in agreement that Scarlett would not be with us much longer. I began making organic medical marijuana oil and having it lab tested to give Scarlett through her feeding tube. It has been a long year of trial and error but we found our magic 25 weeks ago. Scarlett used to seize 6-20 mins of EVERY hour. Now she has had only 4 seizures in 25 weeks:). Her dosage is always increasing and I believe we could have avoided the 4 seizures if we could afford to buy or grow enough of the plant ourselves.
We have found two strains of marijuana that have higher concentrations of CBD than THC mixed into an oil solution work best when alternated every 4 hours. We also use raw cannabis juice during the day. Scarlett uses over a pound of marijuana a month and she only weighs 35 lbs. You can probably imagine the financial strain this has put on us.
Because of the limitations imposed by Nevada County’s medical marijuana cultivation ordinance, we are having trouble growing enough medicine for her needs legally. We live in an area with a very short growing season and extremely high winds so we have to pay high prices to supplement her supply. We started our journey with the highest CBD strains we could get our hands on but learned the hard way that Scarlett needs quite a bit of THC.
It breaks my heart to read about States passing CBD only legislation. To be perfectly honest, I would have been none the wiser if we hadn't experienced for ourselves that CBD only medicine doesn’t work for every child. It is beyond important to me to get the word out that THC is not the enemy. We have to educate those who are still "drinking the kool-aid" so to speak. THC is being villainized because people don’t realize the importance of the whole plant. We have to change this perception.
I can’t thank Americans for Safe Access - NC enough for helping my family find the marijuana strains that have proven to be the most effective at controlling Scarlett’s seizures.
Gabriella (last name withheld by request)
ASA-NC is happy to help any parent or patient fight their illnesses with nature’s own healing miracle, because sometimes, marijuana is the only thing that works. Please discover the truth for yourself at our free screening of Charlotte's Web and seminar on April 19th at the Banner Grange from 2:00 - 5:00pm.