Colorado Cannabis Nonprofit Helps People with Epilepsy

 

Charlottes web

August 7, 2013; CNN

 

Charlotte Figi was only three months old when she began experiencing critical seizures. At age two-and-a-half, Charlotte was diagnosed with Dravet Syndrome, also known as severe myoclonic epilepsy of infancy, and CNN tells the heartwrenching story of the endless list of medical procedures and medications the Figi family tried to prevent Charlotte’s seizures with no success. When Charlotte was five years old, the family was told by physicians that there was nothing more they could do for their daughter.

That’s when Charlotte’s mother Paige decided medical marijuana was worth a try. What more damage could they possibly do to Charlotte at this point?

Paige heard about a child in California with a Dravet Syndrome diagnosis who was successfully treated with cannabis. The Figi family then discovered the Stanley brothers, one of Colorado’s largest marijuana growers and dispensary owners, who were crossbreeding a strain of marijuana high in CBD, but low in psychoactive THC—just like the strain that worked in California.

Paige tried reaching out to doctors for a cannabis prescription, but many thought the risk was too high for such a young child. Finally, Dr. Margaret Gedde agreed to meet and speak with the family regarding testing cannabis on Charlotte.

“(Charlotte’s) been close to death so many times, she’s had so much brain damage from seizure activity, and likely the pharmaceutical medication,” Gedde said. “When you put the potential risks of the cannabis in context like that, it’s a very easy decision.”

The first time the Figi family tried the cannabis strand on Charlotte, the seizures went away for seven days, which was astonishing. Now at age six, Charlotte is vastly improving. Her seizures only occur two to three times a month, usually in her sleep. Charlotte’s father Matt said, “I literally see Charlotte’s brain making connections that haven’t been made in years….My thought now is, why were we the ones that had to go out and find this cure?”

Charlotte’s unbelievable story about how cannabis ended up saving her life also tells the success story of a new Colorado nonprofit called the Realm of Caring. The Stanley brothers founded the Realm of Caring Foundation, which uses concentrated cannabis oils to treat adults and children with diseases such as Parkinson’s, multiple sclerosis, HIV/AIDS, and forms of cancer. The brothers have fondly been referred to as “the Robin Hoods of marijuana,” giving away this new strand of cannabis “for pennies” and using any profits from medical marijuana patients to attract donors to the cause. They named the strand “Charlotte’s Web,” and already have 41 additional patients using the strand to treat cancer- and epilepsy-related symptoms.—Aine Creedon

  • Kathy VanBlarcum

    I am so happy for Charlotte and that it is really helping her and her family.It is very hard as a parent to see your child ill or sick.When you have done everything possible surgerys,VNS and every medication out there.Side effects are so bad with some of these medications.People have the right to the best possible care and medication that helps them.If it is medical marijaua than and it works for that person that is great.If it does not help what do they have to lose nothing.I am for medical marijuana and hope that it is legal soon for us to maybe get our daughter seizuures under control so she can get off some of these medication that are so terrible on there bodys and what they are doing to them.After 16 years of dealing with it she needs a break.
    Mother of an epilepsy patient.

  • Cindy Jenkinson mother of Courtney

    Like Paige I’m the mom of a daughter with uncontrolled seizures . Courtney is now 22 years old with a diagnosis of Celebral Palsy, Epilepsy and dysphasia. She is non-verbal and non ambulatory and I believe is the results of years of uncontrolled seizures. We have tried every seizure medications availble, VNS and the KetoGentic diet with no success. Like Charolett, Courtney has been hospitalized near death. A year ago with the consent of one of Courtney’s doctors I tried cannabis via chocolate bars. The problem with the cannabis chocolate bars is there is no why of knowing how much cannabis she is getting. The doctor suggested using 5mg of Dronabinol which we tried but the affects are not the same. We live in California where all the clinics have been shut down by the cities. I would love to try the high CBD cannabis after watching CNN tonight and seeing Charolett’s story. Like Paige I’m willing to try anything to give my daughter a better quality of life.

  • Olderwoman

    I am a person with epilepsy. Although mine are no where that frequent they can be debilitating and are always at the forefront of my life. I have tried 13 medications. Seen some of the best physicians in the country. Had tests that burned my scalp and kept me in the hospital several times. Many people take anti seizure medications and live a totally normal life. There are a few of us though that nothing stops them. Each day I take 18 pills. Up until about 2 weeks ago I never even thought about this. So, thank you for giving me info on something new!

  • Larry Griffin

    I am 64 years old and have had seizures for 25 years. I have tried every medication available. Every 4-6 weeks I have seizures for 4 or 5 days and then about 5 days of recovery time. The only difficulty from the seizures is loss of memory. and as I get older those memory lapses seem to be getting worse. My question is: are there studies showing improvement with cbd for older epilepsy patients like myself? As an aside my seizures seem to be caused by head injuries when I was a teenager and in my twenties. The medial establishment does not know how to do anything but prescribe stronger meds which have no impact on my seizures.

  • arlyne draper

    We saw the special by Dr. Gupta and believe is great that there may be a way to help children and adults with certain diseases. Parents should have the right to seek other alternatives than the usual prescription drugs. The U.S. should be a leader in researching this part of marijuana for the benefit of all. I congratulate Israel for taking the lead and hope that soon the U.S. start clinical trials on children and adults regarding this issue. We all should join together to bring attention to this possible alternative for our children and our loved ones.

    Arlyne

  • Denise Frick

    I have read about and been a proponent of High CBD, Low THC Cannabis for a while now , and I was So Very pleased to see this Story about Charlotte aired on CNN. Perhaps this Positive Story will give a Bright light to What True Miracles the Use of this Herb can Provide for All of Mankind. The Chemicals we All have been subjected to for So many years from the Pharmaceutical companies are so bombarded with side effects , Perhaps now It is time to try simple medications from the Earth.
    The Work being accomplished in Israel is Outstanding, Our Government should Look at Themselves and Be Ashamed that they have So Villainized such a useful Herb from Nature.

  • Aine Creedon

    Thank you Cindy for sharing your touching story, have you tried getting in touch with the Realm of Caring Foundation? Please email me at aine@npqmag.org if you’d like some help connecting to this organization.

  • Don Anthony

    I’m HIV poz and have been living in severe pain for over 5 years now. I literally left Denver in 2009 to move back with family becaue I couldn’t manage my 22 stairs to my fron’t door. Now after seeing the CNN documentary , I am thinking about moving back to CO. Will the Stanley brothers be able to help me? I hope so. I should be there by mid Sept.
    Don

  • rick

    How can I get some of this Charlotte’s Web in California? I suffer from severe Cronic Seizures. It really hard on me sometimes. I would love to try to have a normal week.

  • Sally

    I saw Charlotte’s story on CNN. I’ve been having seizures since I was 3 months old. (I’m now 51) I’m been on medications all my life – many are no longer used for Epilepsy (hard to explain to young doctors) and had brains surgery for my seizures in 1989 at UCLA.
    Why haven’t the drug companies come up with this in the past? Profits. Or rather, lack thereof.
    There’s also a high fat diet that can and has cured young children of Epilepsy for many since the 1940’s. All Neurologists know of this diet but very few recommend it. Again, I believe it’s because it doesn’t make money.
    Am I going to try Charlotte’s Web? You bet! Just the thought of not being on medications brings me to tears. Not only will I be able to lower/discontinue my anti-convulsants, I should be able to lower/discontinue my anti-depressants as well. (depression is a side effect of anti-convulsants)
    Too bad for the money lost by the drug companies, wonderful for people like me.

  • Steve Lomabardi

    I am 37 yrs old and have had seizures since I was 3 yrs old. I have tried and been everywhere. I am presently being assessed to see if I qualify for surgery. I am also in the process of getting my license to buy medical marijuana.

    I saw Charlottes unbelievable story of how cannabis oils saved her life. I live in Toronto Canada…IS THERE ANYWHERE IN TORONTO WHERE THIS CANNABIS CAN BE PURCHASED ONCE I RECEIVE MY LICENSE TO DO SO.
    Please anyone, I would appreciate any info that will lead me to this cannabis oil.
    I have suffered for many years and now that I am married my life is on hold until I can correct this problem so that we can have a family.
    Any info will be greatly appreciated
    PLEASE HELP

  • Sherryd

    My Epilepsy started when I was 21…I’m now 62. I’ve had surgery 2x…. It didn’t help after surgery. I take 3 different kinds of meds….and now have a VNS it helps but I still take as much med as I did before. I’m trying to get info for medical marijuana. I have to keep trying to find something to help!

  • Kim Hartman

    My sister-in -law suffers with slurred speech and a fear of having a seizure at any time due to brain tumor that was removed 12 years ago. She takes some heavy duty drugs that work temporarily. Watching the CNN special WEED was so inspiring. I was wondering if there was someone she could contact who could possibly help her deal with her Epilepsy.

  • carmen

    Is the CBD comparable with any medication for seizures?

  • Jorge Mejia

    Hi Charlotte’S Web,

    I saw with my wife the Charlotte video several times and we were very happy how the CBD of the marijuana helps the baby Charlotte. My son Kenny was diagnosed with Autism when he was 2 years old and it changed our lives. We moved from Pembroke Pines, FL to Charlotte in NC looking for the best treatment for Kenny when he was 7 years old. Now he is 14 years old and he is smart nonverbal kid that has improved very much but there is something in him that doesn’t let him continue. Here in Charlotte he is taking medicine for seizures, not real seizures with epilepsy, just silent seizures when he is sleeping.After I saw the Charlotte and others videos I knew right of wait that the CBD is the thing that can help Kenny to make that little connection that will join both sides of his brain. What we want after you read my message is get more information of how Kenny can try the miracle CBD. We are praying that someone of the Charlotte’s Web read our comment. Thanks

    Sincerely,

    Jorge and Lucia
    (Please help my son Kenny)
    Mobile: 704 254-8947