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Raise the Realm Day 8: Luke- Autism

Our little boy who we call Baby Luke, is 4.5 years old, and the apple of our eye. He was born what we believed to be a happy handsome little boy and as parents do we loved him unconditionally.

After a few months we noticed that there were issues in Baby Luke’s development, so we brought him to the doctors. Approximately 2 years later, baby Luke was diagnosed with Profound Non-Verbal Autism, massive sight issues and a vestibular condition. We were heartbroken as we knew too well what this meant in Ireland and the hardships both Luke (and us as his parents) would have to face to get schooling, OT, speech, and language etc.

Shortly after Luke’s diagnosis, we noticed a massive shift in Luke’s behavior, not eating, not sleeping, hurting himself and others, we could see his sensory issues explode in front of us driven by the severe anxiety of his surroundings.

We, at this point, have been surviving on 3 hours of sleep a night, at our complete wits end- the continual crying, the no sleep, the violent outbursts, the self-harming- our little boy was not there anymore; he had changed, he was lost in his own mind, his own condition trapping him to this behaviour.

So, we reached out to doctors, the prescriptions kept coming but nothing worked! So at the last point, we tried Charlottes Web Advanced Solution, starting at 0.2ml twice a day and adjusting the dosage along the way. In the first night, Baby Luke slept 9.5 hours! He was 24 hours away from being admitted to a hospital by our GP for refusing to eat in over 5 weeks and what did our boy do? He started to eat ! Yogurt, apples, bananas, fries, pasta, we couldn’t believe it. We cried and cried, as parents angry at ourselves for not trying this sooner, but then tears of joy that our boy would not require a feeding tube.

The results were and still are so amazing that we had to share our story with everyone who would listen. ASD parents have to see with the own eyes to believe what it does.

We started an awareness campaign called Life Being Blue on Facebook. I would recommend any parents in Europe that are on the fence to look at the daily videos look at what it has done for our son and family! Our little boy had gone from skin and bones and riddled with social and neurological disorders, to a child that is trying to communicate trying, to learn and nearly singing! Seeing is believing and Baby Luke’s Videos are there for everyone to see!

There is nothing to loose and much to gain!

Please share our page! Education on this is key people who live with severe ASD need to realize that CW is a possible solution to regain a standard of life. And this is key it’s about potentially gaining a standard of life.

Daddy Luke, Mommy Donna and Baby Luke

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Luke

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Client Spotlight

Client Spotlight: Jessie

I was a hospice nurse when a work accident suddenly ended my career and altered my life drastically. It left me disabled with a spinal injury, limited mobility, and constant excruciating pain.

It seems so silly now, but I was so scared to try cannabinoid therapy. Even though I was taking opiates and benzodiazepines around the clock to manage the pain and muscle spasms.

It’s silly because I had already tried EVERYTHING else, including a major surgery that left me in an even worse condition. But the stigma of medical marijuana frightened me so much, and a risky surgery was more socially acceptable. Deep down, I didn’t believe a plant could help me when morphine barely touched the pain.

Finally, my mom convinced me to try medical marijuana. “You’ve tried everything else,” she said, “you have to try this.” The day I started MMJ is the day I stopped taking benzos and opiates. I haven’t needed them since, and it’s been nearly two years.

The first time I used medical marijuana, the spasms just melted away and the pain lifted. I knew at that moment, this plant could give me a bit of my life back.

Now, cannabinoid therapy is not a magical cure. It hasn’t healed my spine or returned my full range of motion. But MMJ has enhanced my quality of life on a massive scale. Cannabinoids control my pain and spasms without the harsh side effects of opiates.

I’ll never have my hospice nursing career back, but I created MarijuanaMommy.com to help others buck the stereotype and try medical marijuana because this plant is changing lives around the globe. It’s time to stop fearing it.

-Jessie

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Stories

Client Spotlight: Taylor

Taylor started on the CBD oil in December 2015 with Neurologist approval. So the new journey began…

It started out just stopping every seizure without the use of the heavy duty Diazepam rectal gel. To, currently, preventing them all together. Going on 120 days seizure free on the Charlotte’s Web CBD therapy. There have been a few mild break thru seizures previous to this seizure free streak, but mild and very short lived compared to what they were before the CBD oil therapy…and with absolutely NO side effects! This is now mandatory to keep the seizures and other issues under control and at bay. Taylor has shown great improvement in seizure control with the oil. Moods are better, No Diazepam needed, and NO seizures currently. Taylor has been able to come off of every prescription pharmaceutical medication out of the 8 he was on except 1 of them, and once he is seizure free for 6 months he will be able to wean off that final pharmaceutical medication. So to this family, Charlotte’s Web, Cannabidiol therapy oil, has proven extremely effective and has went above and beyond “said claims”. It’s like a miracle! I cannot express the magnitude of the positive impact these oils have had on their lives and seizure control! CBD oil helping is great, and wonderful news and a miracle to see happening for their son. Thanks to this amazing “Side-effect free”, natural oil, our son is happy, healthy, off big-pharma medications and is seizure free! He has his life back and that is the biggest blessing. We have all we ever wanted for him, good health, happiness, and on the road to life without seizures. So far so good. Whether it decreases them 50%, 75% or 100% , it is all a positive change for him and proof the oil works. It is far better than the 0% he was getting on the pharma medications for all his issues. It is fantastic to see him smiling again and to be able to finally say, “I have Epilepsy… Epilepsy doesn’t have me!”

The future may not always be clear or look bright. Sometimes it’s like you are given a timer as to how long you can look in life, but no matter how the future looks, we have to look up to the sky, keep our heads held high and pray. Hold on to hope, because sometimes, that’s all you’ve got. Hope , faith, and love… that’s what get’s us through. TAYLOR IS OUR CHILD, A CHILD: A REAL PERSON, WITH REAL STRUGGLES. WHO DESERVES A CHANCE AT A NORMAL LIFE. CHARLOTTE’S WEB IS GIVING HIM THAT AND MORE!

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Events

Raise the Realm Day 6: Leigh- Cancer

My name is Leigh. My first personal experience with cancer was in 1995 when my mother was diagnosed with stage 4 ovarian cancer and given 6 months to live. Her name was Charlotte and she was a visionary. She lived for 6 years instead of 6 months and when I was first diagnosed in 2012 with Stage 1 breast cancer I remembered her words…”I wish I had never done that chemo or the radiation.”

I chose to have bilateral mastectomies after determining I was BRCA positive. I declined the pharmaceutical drugs that were offered to me and went on my own path to healing. That path has included exercise, healthy eating and juicing, keeping stress low, being grateful…my recipe changes along with the seasons.
In April of 2016, I began taking Charlotte’s Web for swelling in my right hand from overwork, not knowing the cancer was back. In late June, with the swelling completely gone in my hand, I scheduled a surgery to remove scar/fat tissue from the site of the previous cancer and it ended up being malignant. I upped the Charlotte’s Web to therapeutic doses along with high-dose THC in August and completed 60 grams of The Stanley Brothers’ THC Concentrate in 60 days after moving to Colorado in November. I have just gotten a clear PET scan. I am so grateful that the laws are changing and the research is finally beginning on cannabis. I know had the researchers been allowed to explore the medicinal benefits of this “weed” there would be more wellness on the planet….and my mother could still be alive. I am certain that CBD/THC are main components to my wellness and I am so grateful for the access I have to these medicines.

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Leigh

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Client Spotlight

Client Spotlight: Robin

At the age of 57 I have lived with intractable complex partial seizures for 44 years. Neurologists have had me try most of the anticonvulsants that are made and I still take three of them. When I became persistent to my epileptologist about trying CBD he finally gave me the name ‘Realm of Caring’ to contact!

RoC has been a joy to work with as well as CW and my family and I thank you. My last day of cluster seizures (5) was almost a year ago and I started taking CBD oil the next day. I have had no cluster seizures since! My doctor is happy with this outcome and we even cut down some of my other meds, but it’s a careful journey. I still have periodic seizures, 1-2 a month, but they are very mild in length, neurological effects and number compared to 5-7 a month in previous years past. Thank you RoC.
-M.R.S.

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Client Spotlight

Client Spotlight: Aline

Aline was diagnosed with hydrocephalus, a build up of fluid in the brain, when her mom was seven months pregnant. At one-month old, Aline had a Pudenz valve placed which got infected within two weeks. She was in the hospital for about seven months under antibiotics and she started having seizures by the third month that she was in the hospital due to the severity of the infection. Since starting cannabinoid therapy, Aline has changed in a significant way. She’s sleeping better, her appetite is just amazing, she’s more aware of her surroundings and her squint eye seems to get better everyday. Not to mention that her seizures have dropped to 0 in over 6 months!!! The most exciting is that pre-school is now a reality; she has started the past week and she’s enjoying it tons! We have also been able to go out/travel without being worried sick about her seizures. I would love to mention that my relatives are also doing better than ever, as it was hard for them to know that we were always alert and that we might have had to run to the hospital because Aline would seize. The impact is just so much! I’ve mentioned previously we can now see for a better way of living for us and Aline. The whole family is just overwhelmed of how Aline has progressed and how her seizures have dropped. They have been through a lot with with us, going to the hospital, staying with Aline at the hospital (as an emergency room visit we knew for sure that she’d stay in for at least 3 days). We are all just very happy with Aline’s progress. You can’t imagine how happy her cousins are, as she can now attend various events, she even went to a baseball game last week!! We (my whole family and I) would like to thank you from the bottom of our hearts for the opportunity you are giving Aline for a better chance at life. We cant express and thank you enough for how much you are doing for us.

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Raise the Realm Day 4: Melody- Rare Disease

As a parent of a child, receiving a “life-limiting” diagnosis is devastating. After months of hundreds of infantile spasms per day, we knew we had to try something different, something doctors were not initially on board with, especially with Melody being only nine months old. The two front-line medications did not stop her spasms, so we took a leap of faith and followed our gut instincts, bought a bottle of Charlotte’s Web CBD extract and, with the help from the Realm of Caring we figured out her dose based on her weight. She was not one of the “miracle stories” where the seizures stopped after the first dose, but we were prepared to give CBD a real chance to work, so we agreed to try it for three full months. She continued to have seizures, but after three weeks of Charlottes Web, we saw noticeable improvements in her cognitive development. She started sitting up on her own and was babbling again, a few skills she had lost after the seizures started. After seven weeks on Charlotte’s Web, her infantile spasms stopped altogether and since that date, she has continued to improve in all areas, much to the surprise of her doctors. A little girl with Aicardi Syndrome who we were told would never crawl, walk, or talk is now dancing, taking long walks outside, running, and has learned about 40 words. We decided to wean Melody off of Sabril and her last dose was September 2016; so she is now only taking Charlotte’s Web and she is beating the odds, one milestone and one word at a time.

We are over the moon watching our Aircardi princess love her life. Melody gives kisses and hugs and smiles and sings, and we know in our hearts she would not be doing these things without Charlotte’s Web. Her story gives hope and has encouraged other families to try CBD oil and has helped change lives of other children struggling with seizures. We could not be more proud of our girl and her resilience and we look forward to her future, something doctors warned us may not be possible. Charlotte’s Web continues to be the best decision we ever made for our sweet Melly and we remain forever grateful to the Stanley Brothers and everyone at the Realm of Caring and CW hemp.

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Melody

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Client Spotlight

Client Spotlight: Helen

I have been having muscle spasms severely since I was about 15 years old. I’m now 45 so that is a long time. Most days it feels like all my muscles are going to rip off my body at any moment. I ruptured a disc in my thoracic spine in my mid 30’s. T7, T8. I was told this is not common, but from all my research it is more common than doctors say. My ruptured disc is causing spinal cord compression. I can NOT have surgery because I have some kind of bleeding disorder. No doctor will touch it. To make matters worse I do not have health insurance.

I have been suffering a very long time. It is bad when you wake up and all you think about is the pain. People are talking to you and you are in so much pain you do not even know what is being said.

Three days! it has only been 3 days! and I feel so much better. It was about 3am this morning, when I just kind of felt as if someone was putting a soft cloth over the screaming pain. I’m excited. I may get to enjoy some of my days. I know it has only been three days, but I have never felt this kind of relief. It’s a numbing sensation I guess is the best way to describe how It feels. Best money I have spent in eight years. Thank you, Thank you.

-Helen

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Client Spotlight

Client Spotlight: Benjamin

A New Journey – Learning, Love and Policy

Sadly just 10 days after our son’s story was published in the local Highlands Ranch Herald for making it four years and nine months seizure-free, Benjamin started having seizures again Thanksgiving night 2015 which was nine months after he was weaned from all pharmaceuticals.

Benjamin 14 years old began to have Tonic-Clonic type seizures every few days with some lasting up to four minutes in length; he had four of these within 14 days into December. It was advised by his neurologist at the Denver Children’s Hospital that we put him back on pharmaceuticals. After some research and a new article that expressed recent warnings from the FDA in regards to suicidal thoughts and actions as a side effect of 11 anti-epileptic drugs, three of which Benjamin had been on before and was being asked to take again, did not seem like an option any longer! So in mid-December I made the decision to start Benjamin on Charlotte’s Web Hemp Extract after contacting the Realm of Caring in Colorado Springs on how to purchase Charlotte’s Web, and help me with dosing so that we could keep Benjamin seizure-free once again in a natural way without side-effects!

Within a couple of days I shared the news of our new therapy change for Benjamin with his school nurse as I had for any other medication change over 10yrs since pre-school (I also included in the email, his teachers and principal). I knew we lived in Colorado and marijuana itself is legal and though I am giving my son hemp extract which is considered a dietary supplement that can be mailed to all 50 states; I did not think that we would have legal issues surrounding our choice for our son to have an alternative medicine.

To my surprise I received a call from Child Protective Services three days before Christmas asking me if I had a prescription to give my son Charlotte’s Web. In my inquiry to find out who reported us I would eventually be threatened with a caseworker if I did not comply with the child welfare administrators request for me to provide two doctors notes. I quickly realized that she was expecting me to have a registration card for my child taking a dietary supplement which she was requiring under article XVIII in section 14 of the Colorado Constitution as it applies to medical marijuana. I was able to point out to her that if she just read a little further in section 16 of the Colorado Constitution as it talks about hemp, it is exempt from being referred to as marijuana and therefore I was not required to provide a registration card to give my child a dietary supplement of hemp extract. This would later be confirmed through the Colorado Department of Public Health and Environment (CDPHE) who provide the registration cards to medical marijuana patients and they would also tell me that if our child is taking hemp we do not need a registration card! So after educating our local Department of Health and Human Services on the differences between hemp and what they consider to be a marijuana derivative she changed her tune and asked for a list of prescriptions that my son was taking and only then would she closed my case but not until after Christmas. She let us believe through the whole Christmas holiday weekend that we might be paid a visit. We feared that if the caseworker came to our house that we would have lost our son over a dietary supplement they knew nothing about, all in retaliation for asking questions.

By asking questions it would be revealed to us that we were reported for a “suspicion of abuse and neglect” because we told the school that we were giving our child Charlotte’s Web. We were not asking to give it to him on school grounds or asking a nurse to administer it, we were just merely stating that we were changing his therapy at home but they could watch for any changes at school since they were with him the majority of the day! We figured out it was the school nurse based upon what she said in the transcript read back to us, since CPS could not give us a name of who reported. It would be expressed to me that nurses are mandatory reporters in the community, in an effort to mitigate any wrong doing. However, I would discover the school district had actually recommended that all school nurse report ALL FAMILIES on a suspicion of abuse and neglect regardless of whether they thought parents like me were abusing or neglecting my child. The school district actually felt by having their nurses report families to CPS they were protecting themselves, whether a family was providing their child with what they consider a marijuana derivative including hemp.

Of course I had every right to report the school nurse to the Department of Regulatory Agency (DORA) for false reporting. In her report, the nurse stated that “the child is very safe and family very loving” which would be a contradiction to why she would report based upon a suspicion of abuse and neglect. She also added, she was only reporting us on a recommendation by her employer so that she would not lose her job. Since I have a history of working with nurses in my past position as an administrative assistant (in the healthcare field); I did not feel it was ethical for an employer to demand their nurses to report families like ours when they did not equip them with the educational tools to make the right decision, on cannabis or the laws surrounding it. I never reported the nurse. It has been very important for me to not only look out for my family, but also for those who are responsible for looking after my child. Part of my mission was to make sure the school district was not pinning nurses against families and vice versa or families would be hiding in the shadows due to a lack of trust!

Within the first couple of weeks into the New Year 2016 I would be introduced to Stacey Linn and hear her story with son Jack Splitt, a young man just a little older than Benjamin with cerebral palsy who was not allowed to have his medical marijuana patch on at school. Stacey Linn passed Jack’s Amendment in 2015, so school districts could start writing medical marijuana policies for their students and allow medical marijuana to be administered on school grounds in a discrete location. Unfortunately no school district wrote policy for medical marijuana because it was only recommended at that time.

Stacey Linn would accompany me to meetings at the school district where we asked questions why they would demand their school nurses to report families like us to Child Protective Services for giving our children alternative yet legal medicine. The school district felt it was a liability for their nurses and they were in fear of losing Federal funding if we brought cannabis on campus to give to our medically fragile children. I would eventually file a case with the ADA (Americans with Disabilities Act) manager at the school district since I found it discriminatory for nurses to reporting children to Child Protective Services when most of these children are medically fragile, are usually on an IEP (Individual Education Plan) and the school district gets Federal funding for these children. It was quickly realized that the school district like others in Colorado had not written a policy surrounding medical marijuana, cannabis, or hemp etc… My job turned to working with school board president Meghann Silverthorne and vice president Judith Reynolds to get a policy rolling in Douglas County, and I had their support right away! I attended every school board meeting since February to bring light and educate the other school board members what happened to us and how we would like to see a policy not only implemented here, but our nurses educated so what happened to us would never happen to another family!

Stacey Linn would eventually start working with Representative Jonathan Singer to bring forth HB16-1373 “Students Medical Marijuana Use At School” also known as “Jack’s Law” to legislators at the State Capitol, so that school districts in the entire state of Colorado would have to write medical marijuana policy! I and a lobbyist by the name of Cindy Sovine-Miller were brought into help with the grassroots efforts in spreading the word about this new bill along with many other parents who were fighting for this too! One day with Benjamin at the Capitol, we ran into our Conservative Senator in Douglas County, Chris Holbert. After hearing our story, offered to Co-sponsor HB16-1373 in the Senate especially for Benjamin. Since the bill mainly laid out plans for medical marijuana in regards to Article XVIII in section 14 of the Colorado Constitution it was not applicable that hemp in section 16 of the Colorado Constitution be brought into the bill since they are different. It was still up to me to make sure that when my school district was writing their policy that they differentiated hemp from marijuana, but the question remained if they would since a Colorado Springs school district D49 would be the first in the state to adopt a medical marijuana policy though they did not differentiate hemp as I suggested in a school board meeting they held in the spring.

After 91 of 100 legislators between the House and Senate voted YES on HB16-1373, on Monday, June 6th 2016 with Benjamin looking over Governor John Hickenlooper’s shoulder, he sealed the deal by signing HB16-1373 “Students Medical Marijuana Use At School” into Colorado law! We were a very proud family to be there at that moment in time, with Jack, Stacey, along with other families watching history being made! Benjamin and Jack would be given one of the pens the governor used to sign the bill with as well!

Our job was not done just yet, we are now in the implementation stage. We received word that the Douglas County School District board of directors will be presenting what we call, “Benjamin’s Policy” at the next school board meeting on Tuesday, July 19th 2016! Not only will the school district be taking into account Jack’s Law (we just passed regarding medical marijuana), they have also heard my request to differentiate hemp oil, cannabinoid products as well as add the following to protect the nurses and staff:

    “District employees shall not be obligated under district policy for reporting suspected child abuse or neglect based solely on the parent or guardian administering medical marijuana, hemp oils or other cannabinoid products in compliance with this policy. This is not intended to alleviate any employee from his or her reporting obligations under applicable state law.”

Even though D49 was the first to vote on their Medical Marijuana policy, Douglas County is actually the first to write a comprehensive Cannabis policy that includes the Administration of Medical Marijuana, Hemp Oils and/or Cannabinoid Products as well as protecting their staff and end the criminalization of families trying to give their medically fragile children a better quality of life!!!

We are proud of our school district that heard our requests and wrote a policy that fits the need in our community, this way families who have been hiding it can come out of the shadows, and nurses do not have to fear losing their jobs when they know we are actually helping our sick kiddos!!! As of Saturday, July 16th 2016, Benjamin will be seven months seizure-free, but not only is he free from seizures again, this time his world has opened up more thanks to Charlotte’s Web Hemp Extract, his memory has improved to the point he can sing along to songs on the radio because he can remember the words. He was able to read short speeches before legislators this year, but he would have never been able to do that prior to Charlotte’s Web. He is communicating, learning and building things…without any adverse side-effects…life is good for Benjamin and it was worth the fight so others would not have to worry about what we went through!

When I think back to the mom I was 11yrs ago when Benjamin was first diagnosed with Epilepsy at 3yrs old. On how the pharmaceuticals scared me and changed my son in negative ways…I realized my fight this year was for the scared mom I was 11yrs ago. I wanted this alternative back then, but if I had to fight this fight for cannabis back then I would have not been strong enough to do what I did this year!!! It was worth it all; even for the parents who do not yet know they might need this same alternative one day, but will not have to fight for access in schools in Colorado!!!

Written by Amber Wann Permission is given to share all or parts of our story in a way that would benefit others!

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Raise the Realm Day 2: Brandon- Brain Injury

I always thought of myself as an athlete. After playing hockey for several years I joined the high school wrestling team. Wrestling is where I belonged. I went off to MSU where I learned to work hard and become the person I am today. I received a NCAA Division II All-American honors in my senior year.

2008 was the start to my MMA career.

I’ve always worked hard, but taking care of myself before, during and after each training session wasn’t always a priority, until recent years. I quickly realized my body no longer healed the same as it did when I was in high school. Recovery is important to me and taking care of myself quickly became my priority! I started taking vitamins and eating healthier but those changes still couldn’t prevent pain or help ease it. My daily routine consisted of protein shake full of vitamins for breakfast followed by a handful of more vitamins like zinc, turmeric, b-12’s, C, Fish Oils, wobenzym etc. and for pain, I don’t even want to get started.

Fast forward 8 years, 20 professional MMA fights, 2 ACL surgeries, dislocated ribs, broken hand, multiple broken fingers and thumbs, & broken arm, I was ready for some relief any relief. When I’m in pain I get moody and I become antisocial and withdrawn. I am not the best version of myself in pain. CBD has done for me what I thought only quitting could do. I started taking CBD 3 months ago and it’s results are better than I could ever expect it to be. Battling anxiety and muscle fatigue and inflammation, I also struggled with insomnia and as an athlete no sleep means no recovery. I was always in pain or injured, CBD has given me another chance. Protecting my body and brain from further damage and taking something like CBD that treats pain, is anti inflammatory, anxiety and insomnia was a no brained . Now it’s part of what I do! My goal is to become a champion, in order to achieve that my body has to be in top condition.

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Brandon

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