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Campaign Countdown

1 DAY LEFT: Reason #1 why you should donate to Raise the Realm: Charlotte

Photo from Face of Cannabis

Meet Charlotte: As of Februrary 2015, Charlotte is 3 years 9..9% seizure free. While Charlotte used to struggle just to survive, suffering through 40+ grand mal seizures per day, she is now able to do many of the things that her twin sister can do. She has friends, rides horses, rock climbs, and even recently enjoyed a multi day family rafting trip along the Colorado river!

Her wheelchair and seizure helmet are in storage collecting dust. Dravet Syndrome‘s horrors and the typical cocktail of pharmaceuticals are no longer a reality for Charlotte. Being the first young child in the state of CO treated with Cannabidiol, the Stanley family named their breeding project of non-psychoactive, high CBD:low THC plant after her; “Charlotte’s Web“.

Charlotte is featured in the CNN documentary “WEED” by Dr. Sanjay Gupta

2 DAYS LEFT: Reason #2 why you should donate to Raise the Realm: Allie

Photo from Face of Cannabis

Meet Allie: “Allie is 15 yrs old and has had seizures since the age of 6 months. Since starting THC & CBD oil, she is having less and less seizures everyday. She is more calm, smiles more, and laughs a lot. Allie handles going out in the public very well. She understands things like sit down, don't pick up that. Normal things we say everyday, her moods are so much better. She isn't ill much anymore. Allie loves school and everyone loves Allie at school. She is just a delight to be around. She plays with her brothers and interacts with them and shows that she was interested. I miss home but thank God for CBD/THC oil it has give us our baby girl back.”

3 DAYS LEFT: Reason #3 why you should donate to Raise the Realm: Chase

Photo from Face of Cannabis

Meet Chase: Chase’s seizures started at 8 months old. He had many head drops that we thought were due to low muscle tone. When he started sitting up, it was apparent that they were far more involved. Chase was finally diagnosed with Doose syndrome when he was 3 years old.

Today, Chase is a bright, energetic, 9 year old boy. He loves to laugh with his brother, and play outside. When Chase arrived in CO last December, he was having close to 5000 seizures a day, had failed steroids, the ketogenic diet, and nine seizure pharmaceuticals. Fast forward one year, and Chase's seizures are ~50 – 60% more controlled, and he's on lower doses of both AED's.

In the past year, Chase's ability to learn has blossomed. Before, he spent 2 years learning the 5 letters of his name. At his IEP in January he had successfully learned all 26 letters, 9 of them in the past three months! Chase is more engaged, communicates more purposefully, and is growing cognitively every day. Thank you, ROC, for giving Chase a chance to enjoy life!

4 DAYS LEFT: Reason #4 why you should donate to Raise the Realm: Michaela

Photo from Face of Cannabis

Meet Michaela: “Michaela is a 3 year old little girl from Illinois. She has been on CW (in Colorado) since January 2014 and it has reduced her seizures 90%! She is currently in the hospital for chronic pancreatitis with pseudocysts. It has been 153 days with no end in sight. Two weeks ago, we made the decision to stop all cannabis oil. It was a very tough decision, but the oil was the only "unknown" that we were putting into her body. The reason I say "unknown" is because it has not been studied, so we do not know 100% if it could be irritating her pancreas. It is currently a scheduled 1 drug which means the CSA says it has no medicinal value and as a result cannot be studied. The doctors and we DO NOT feel that the oil is making things worse, but like I said earlier, it is the only "unknown" and her pancreas is not getting any better.

Since stopping the oil, Michaela is having more frequent and much more intense seizures. Once we can rule out cannabis as being a contributor to her pancreatitis, we definitely plan on restarting the oil. We hope to do so very soon. Most likely, the oil was actually helping, not hurting since it is an anti inflammatory. Now we have to worry about seizures on top of everything else. Cannabis was the only medicine that truly controlled her seizures. Depakote helped a little though it is actually part of the reason why we are where we are.

Cannabis DOES have medicinal value! It needs to be rescheduled so it can be studied. Please support #CARERSAct #C4AN #StoptheSeizures”

5 DAYS LEFT: Reason #5 why you should donate to Raise the Realm: Benji

Photo from Face of Cannabis

Meet Benji: Super Benji has been on CW for a little over a year. His quality of life has improved dramatically. He has been able to completely drop two strong pharmaceutical drugs and reduced the last two by 2/3. He has gone a whole year without ANY hospital visits due to seizures, his spasms are down to 2 to 5 a day and they are also less intense, gained 5lbs, it use to take a year to gain just one, his vision has improved, he is more alert, more active, engaged and stronger. He also started walking with his gate trainer again and most incredibly has even learned how to ride an adaptive tricycle. The last 15 months of his life have been the BEST OF HIS LIFE!!! Thank you ROC for giving my son a new life!

6 DAYS LEFT: Reason #7 why you should donate to Raise the Realm: Jennifer

Photo from Face of Cannabis

Jennifer’s testimony to the Virginia General Assembly’s House Justice Committee (Feb 2015):

"My name is Jennifer Collins and I am 15 years old. I have lived in Fairfax, Virginia for most of my life, except for this past year. I have epilepsy. I have small seizures all day long. Sometimes they cluster and I have big, grand mal seizures . I don’t remember them, but I don’t feel very good after they happen.

I am speaking today for myself and all of the children who have epilepsy that isn’t controlled by medications. Those children who can’t speak for themselves and could die if they don’t get access to cannabis oil.

For the past year, I have lived in Colorado with my mother (separated from my sister and dad) so that I could take oil from the cannabis plant to help with my seizures. Before cannabis I was having around 300 seizures a day and the side-effects from my medication were horrible. The medicines made me not able to think, depressed, and sometimes violent. I would hurt my mother, and it made me feel very bad after. I sometimes wanted to hurt myself. I thought about killing myself.

Last week, I took a medication that the doctor gave me and it made me hallucinate. I didn’t know who my mother was. It was bad. Cannabis oil has never done that to me.

The THCa my mother gave me in a dropper under my tongue in Colorado did not get me high. It made my seizures better. I had a lot less of the small ones, and I haven’t had a grand mall seizure in over a year now. I had no bad side-effects, only good ones. I was able to go down on my other medications. I could think better, my grades got better. I did not have violent rages anymore. I lost the 30 pounds I had gained on my medications. But, I missed my father, sister friends and other family. It was so stressful. So I came home to Virginia to help get this bill passed.

I am asking the Virginia General Assembly to pass a bill so that I can take my medication in Virginia. I want all the kids who have epilepsy to be able to take the medicine too. I don’t want to go back to Colorado. I want to stay home and be happy and healthy here where I belong.

I am not sure why everyone is so scared about this medicine. I saw it help a lot of kids in Colorado too. It saved some kids’ lives. Peoples say that marijuana is a gateway drug, but to what? From what I have seen and experiences, marijuana oils have been a gateway to new possibilities and a better life. What are you so afraid of?"

The bill Jen was referring to passed and signed into law on February 28, 2015. Jennifer continues to fight for access for all children everywhere.

7 DAYS LEFT: Reason #7 why you should donate to Raise the Realm: Lizzie

Photo from Face of Cannabis

Meet Lizzie: Elizabeth is a spirited 5 year old. She was diagnosed with intractable epilepsy at the age of 5.5 months in the form complex partial seizures with rapid secondary generalization coming from the left side of her brain..

Epilepsy has limited her ability to talk and interact with the world due to autistic tendencies . Elizabeth is controlled on medication most of the time, but has failed many medications. When she has a seizures they multiply quickly, then become sub-clinical and put her into Non Convulsive Status. Her family moved to Colorado from New York in December 2013 and started her on Charlotte's web. Since then, Elizabeth's seizure have been under better control and her ability to communicate and interact in the world have significantly improved.

8 DAYS LEFT: Reason #8 why you should donate to Raise the Realm: Riley

Photo from Face of Cannabis

Meet Riley: “Riley had his first seizure at 3 yrs old. It was a Tonic Clonic. He would continue to have a mixture of Myoclonic jerks and TCs. At 4 he was implanted with a VNS which did not improve his seizures. The following years were a nightmare of failed drugs and constant seizures.

Riley was hospitalized in 2012 and put in a medically induced coma for 3 weeks. Following that he was in rehabilitation for 5 weeks. He had a great deal of challenges afterwards including speech, walking and being able to function. He was placed on 4 powerful anti-seizure medications at very high doses. He was still seizing and homebound unable to attend school or take more than 15 or so steps without needing to rest. He used a wheelchair to get around. His seizures continued to worsen. I didn't see any hope. We were headed down a terrifying and hopeless path. Unable to function due to high doses of powerful meds and not having a quality of life.

In April of 2014 Riley started on THC-a and I saw an immediate reduction in his seizures by about 70%! I thought it was too good to be true! A miracle! I was able to reduce his Phenobarbital without going to the ER. Something I could never do! He was able to attend school for the first time in 2 years. His sleep apnea was gone! I have been able to reduce his Phenobarbital by 5 pills a day to 1. He is almost off! We started Hemp oil on January 16 . At the lowest dose he continues to thrive and I have weaned his Onfi from 6 pills a day to 4. Everyday I see the miracle of my son thriving physically and cognitively. I praise God and the Stanley Brothers everyday for the miracle of Cannabis Oil and what it has done for my son.

TAKE ACTION Donate to Riley's Campaign

9 DAYS LEFT: Reason #9 why you should donate to Raise the Realm: Mikayla

Photo from Face of Cannabis

Meet Mikayla: “It was over one year ago since we started Mikayla on Charlotte’s Web and what a year it has been! It is hard to express in words the improvement we are experiencing in her quality of life.

On December 26th 2013 Mikayla was on three pharmaceuticals which left her pretty much out of it most of the time, we were just moving Mikayla through life, we have weaned her completely off of one and are two thirds of the way through the second. We have seen unbelievable improvements in her thought process, speech, strength, posture, and confidence. We can carry on conversations with her, she sings (lyrics are easily understood), she can say her full name, and she expresses emotions like never before. Mikayla has been on pharmaceuticals that were suppressing many of these processes and feelings since she was four months old.

Mikayla’ thought process in this video is so age appropriate, just putting all the elements together to make this roller racer go, she has so much energy! We could go on and on about her progress over the last year, can’t wait to see what the next year holds.

We get so excited about the improvements to the quality of her life that we forgot to mention that seizure control is getting better daily. This has been the best thing we ever could of done for Mikayla giving her cannabis oil to bring her back to us! We are amazed daily with her progress!”


10 DAYS LEFT: Reason #11 why you should donate to Raise the Realm: Addy

Photo from Face of Cannabis

Meet Addelyn: “What a difference a year makes!! Addy is an adorable two year old little girl with infantile spasms and intractable, medication-resistant epilepsy. At this time last year Addelyn had racked up more than twenty separate emergency hospitalizations for either increased seizure or heinous side effects of the medications she was prescribed to control them, in about nine months time. Heavily medicated and still seizing many times a day, Addy was sleeping upwards of twenty-two hours every day and had NO quality of life. We were at the point where we were simply carrying her body through life with us and were largely convinced she would not be with us much longer.

Within minutes of her first ultra low dose of a non-psychoactive CBD oil, Addelyn SMILED. It had been months and months since her last half-hearted grin. The sudden flood of hope was overwhelming. Over time, we slowly increased her dosage of CBD, and even added THCa, to her regimen. During the last year, Addelyn has gained about ten pounds, discontinued the Ketogenic diet, reduced her Sabril dose, and is currently in the final stages of her ONFI wean, all while maintaining reasonable seizure control. Our once lifeless child, now rolls over, sits independently, plays purposefully and excitedly with toys, gives HUGE smiles, hugs her brother, and laughs out loud EVERY SINGLE DAY! Our time as a family is no longer spent in a hospital, but at the zoo and the park.

Addelyn started cannabis therapy exactly a year ago today. What a transformation!!! Hands down, it was the best decision we ever could have made for her. Cannabis has given Addelyn back a life worth living."

Addelyn's family advocates and educates on behalf of Addy and children like her. Click here if you wish to join TEAM ADDY and follow Addelyn's progress and help this mission


11 DAYS LEFT: Reason #11 why you should donate to Raise the Realm: Jesse

Photo from Face of Cannabis

Meet Jesse: Jesse has now been on CW for over a year and the difference is remarkable! His immune system and muscle strength is stronger and bowel and sleep issues have resolved making for a clear minded child. His fine and gross motor skills have improved as well as facial ticks and social anxiety. He no longer requires a modified curriculum in school, has joined school band and plays the bells and snare drum; unthinkable for a child who has such noise aversions that he could not listen to the sounds of the phone dialing. As of the date of publishing, Jesse has been 54 days seizure free on only CW!.

Jesse James, Age 9, is kind, sweet, forgiving, smart and affectionate. Jesse has a 10p15.3 Chromosome Deletion, Epilepsy, High Functioning Autism, Asthma, ADHD and anxiety disorder. At 1 year he received his MMR and Varicella and became lethargic, the next day he went into status and was life-flighted with a diagnosis of viral meningitis from the varicella vaccine. Thus began our journey trying varying anti-epileptic medications.

In August of 2014 one of Jesse’s therapist told us about Charlotte’s Web so we watched the CNN Documentary. My husband was deployed at the time so he worked from Africa and I from Colorado to gather information for a chance for Jesse.

"We are forever grateful to the RoC and the Stanley Brothers for giving our boy quality of life, social acceptance and happiness!!" - Jesse's family


12 DAYS LEFT: Reason #12 why you should donate to Raise the Realm: Maddie Gorman

Photo from Face of Cannabis

Meet Maddie: Almost immediately after beginning treatment with Charlotte’s Web, Maddie began making gains in development for the first time in five years. Her seizures reduced by about 50%. Over a year later, she has close to a 90% reduction in seizures overall and has been learning and retaining new skills ever since starting Charlotte's Web. She has a completely different quality of life now. Her family is extremely thankful that cannabis oil is available to children in Colorado and they are fighting to make it legal in NC so that she can return home and the family can be reunited.

Madeline was perfectly healthy until age 11 months when her first fever turned out to be Infant Leukemia, a poor prognosis cancer. She was treated with intensive chemotherapy but was still developing normally and handling the chemo well. Then at age 25 months, she began having seizures. She was diagnosed with Infantile Spasms, another devastating diagnosis. It is extremely unusual to have both, so the thought was that if the chemo was stopped, the seizures might stop as well. Unfortunately, after taking the risk of stopping her chemotherapy protocol early, the seizures have never stopped.

Now at age 7, Maddie remains in remission from her leukemia, thankfully. Her epilepsy has been much more challenging. With the exception of 2 months in 2010, she has never been seizure free. In 2010, her epilepsy evolved into Lennox Gastaut Syndrome, another of the catastrophic epilepsies of childhood. Over the years, she has failed 13 anti-epileptic medications, the ketogenic diet, and IVIG therapy. In the summer of 2013, she underwent corpus callosotomy brain surgery in an attempt to stop her devastating drop seizures which made her extremely prone to injury. The surgery was successful for a short time, seizures were reduced dramatically and the drop seizures were gone for three months. When they returned, they came along with two other dangerous seizures types that had also been relatively well controlled after surgery. At that time, her parents made the tough decision to move her to Colorado for treatment with Charlotte’s Web cannabis oil. It was particularly difficult because Maddie’s dad is in the military and was not able to move from NC with Maddie and her mom.


13 DAYS LEFT: Reason #13 why you should donate to Raise the Realm: Tyler Brown

After starting CW, Tyler’s family was pleasantly surprised when Tyler caught a cold and his mom packed their bags for the hospital, but they sat in the living room just waiting. That first cold only lasted 2 days, and they never stepped foot into the hospital. Tyler’s family began to see a pattern with colds being short lived and fevers only lasting a day or two. To date, Tyler has been on CW for 15 months and has had ZERO hospital admissions.

Prior to CW, each time Tyler caught a cold (which was quite frequently) it would immediately manifest into pneumonia with a 7-10 day hospital stay in the PICU. Tyler constantly dealt with collapsed lungs, chest X-rays, biPap, and much more. The top picture is of Tyler in the PICU with pneumonia.


14 DAYS LEFT: Reason #14 why you should donate to Raise the Realm: Millie Mattison

Millie has been on CW for nearly a year now and the results are amazing. She is no longer comatose from sedatives and is sitting, vocalizing and starting to notice objects. She has had a drastic reduction in seizures, 75-90% and for the first time since birth she has finally experienced extended periods being seizure free!!

Millie is a beautiful 3 year old little girl, her journey began with an Infantile Spams diagnosis at 3 months. The Mattison family tried several medications with Millie including the ketogenic diet, the latter causing severe metabolic acidosis nearly killing her and resulting in a 3 month PICU stay in the summer of 2013. She had hypsarrythmia and spasms up to 300 per day; at that time, her family was told she had a “bad brain”, asked to consider discontinuing care should she return to the ER/hospital and told to consider hospice care; they were also told she had a 0.1% survival rate. Milie’s family did not feel this was the end of her journey and while she was in the PICU happened upon CNN’s documentary WEEDS. The Mattison’s feverishly gathered as much information and experiences as they could, presented them to their neurologist in Cincinnati and were told to “Do what you need to do to help your daughter”. So we sold our family business, packed up our other children and moved from TN to CO in January 2014. .


Last modified on Thursday, 26 May 2016 13:08
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