She is more active with more verbal communication

Story provided by Grace’s family

Grace is doing so well since she has been on her CBD, I can’t even explain how appreciative we are. We have not seen any seizures, and her skin is looking so much better. She is more active with more verbal communication and seems to be getting her milestones caught up. Her bloodwork is improving, we are feeling so blessed! Sending the RoC team HUGS <3

 

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Mugs of RoC – Steve – Care Specialist

Sometimes it is those who walk the earth with the lightest steps and brightest smiles that have carried the heaviest loads.

By Lisa Lopez

Steve came to us as a volunteer. He is compact, bronzed, has white short hair and a thin lined goatee that accentuates his permanent boyish grin that speaks of mischief and an “I will never grow up” attitude.

 

His mind is fast and his wit is faster! It’s only when you look into his eyes that you notice the long roads that he has traveled to get to the other side of life – the side of hope. It is the same eyes that well-up as he speaks of the loss of his mom. A loss experienced from a fifteen-year-old boy that still needed mothering and a mature man that will always feel the unavoidable void.

 

“As a little kid with ADD (attention deficit disorder) my family told me that if I could not focus and do well in school, I would never amount to anything, he recounts, and I spent the next 22 years doing THAT.”

 

Steve is transparent about his tumultuous road into addiction and his inspiring, rare road out of it! In his thirty years of sobriety, he has had a successful career, a long-term marriage, children (his, hers and ours) and a spirit to overcome obstacles.

 

We’ve been fortunate to meet Steve as he reached a point in life in which he has had the unique opportunity to do something that he considers a “calling” versus filling a monetary objective.

 

“I get to teach people how to strap on their cape and be their own superhero. It requires every bit of my life experience to do the best for people, I think.”

This is when you see that his exuberance is a choice or as he puts it, “Either it’s all funny or nothing is funny.”

 

As I sit in the conference room typing next to him, I become aware of our many layers and the experiences that form each one.

Steve, has a classically cool California look backed by an effortless casual style of jeans, a solid crewneck tee with a button-down blue shirt layered in a “just because” look.  I am not expecting to see a clear mason jar as his mug. If Ray Ban™ made a mug, I would expect him to be casually totting one of those.

“It has a wide mouth and it just feels right,” he says as he takes a large sip.

 

What’s in it?

“Water. I might add a lemon sometimes if I am feeling edgy,” he says.

He smirks in that half-slanted way that always leaves me wondering if he is pulling my leg. I prod him further about his drinking habits. “I quit drinking soda; I used to drink mass quantities of coffee, now I just drink 2 cups of coffee a day,” he laughs and continues evenly “because I figured that calmness is okay.”

Who do you admire?

“Robin Williams,” he says. “Possibly the ultimate example of where comedy and tragedy intersect… as is life.”

Tell me something about yourself that nobody else knows?

“I always wanted to be a drummer and a singer”, he says.

What kind? I ask. “A gooood one?” He adds jokingly, then says, “Rock and Roll baby, Rock n’Roll!”

“In my hyperactivity as a child everything was a drum to me” (he beats on the table with his two pointing fingers for effect while singing, I don’t want to work, I just want to bang on the drums all day…) “and when I took lessons, it made me want to put the drumsticks into my eyeballs because everything was so structured!” I laugh hysterically at this as Steve is perpetually thirteen in my mind.

If you had a magic wand and could change ONE thing, what would it be?

“I would be taller,” he shrieks, then laughs and adds soberly this time, “I would add a wave of compassion that could cascade over everything, you know?” He looks down pensively and I feel his tender spots. In fact, as much as we have laughed and ALWAYS laugh, this is the most serious I have ever experienced Steve.

 

What quirks do you have?

 

“What quirks do I NOT have!” He muses and amuses! He has categories for his quirks! “I hate to be late, it doesn’t mean that I am not. I am the 8:01 express! But those are standard quirks, I want to give you quirky quirks! I’m weird,” he admits (I act surprised). “I didn’t wear long pants in ten years!”

My inner Floridian asks, Not even in winter?! “Nope, not even in Colorado!” He remarks with a Spanish accent on Colo-RAA-do since he speaks un poquito de Spanish.

 

Until what age do you want to live to?

 

“92” he replies without thinking.

Por que 92, I ask?

“It is just a number; honest to God anything over 65 is a family record,” he states flatly.

No wonder you are not looking forward to your next birthday, I say jokingly to break the melancholic mood.

He laughs and recovers slightly, “I am, but it’s heavy.” His somberness returns, “It explains why most of my quirks revolve around health. Cannabis is a tool in the tool belt, as is diet, exercise and I have a slightly obsessive nature around those things.”

We are suddenly interrupted by a knock on the door letting us know that Steve’s appointment has arrived and I tell him not to worry, to send me his favorite song when he thought of it.

A couple of weeks later, I received this song in my inbox. I smile as am no longer surprised by this tenured soul with a seasoned heart.

It’s a Wonderful World

I see trees of green, red roses too, I see them bloom for me and for you And I think to myself What a wonderful world

I see skies of blue and clouds of white The bright blessed day, the dark sacred night And I think to myself What a wonderful world

The colors of the rainbow so pretty in the sky Are also on the faces of people going by

I see friends shaking hands saying, “How do you do?” They’re really saying, “I love you.”

I hear babies cry, I watch them grow They’ll learn much more than I’ll ever know And I think to myself What a wonderful world Yes, I think to myself What a wonderful world

Her Crohn’s disease and arthritis are in remission

Provided by Michelle’s family

Michelle is our only child. She became sick at 15 months old following an encephalopathy that destroyed her health. Michelle is now 23. She’s been diagnosed with severe autism (non-verbal), intractable grand mal epilepsy, Crohn’s disease, spondyloarthritis, uveitis, legal blindness, osteoporosis, severe deformity bilateral (feet bones), stage III steatohepatitis (liver disease) and severe static encephalopathy.

When Michelle was 10 years old she had her first grand mal seizure. It was so strong that it caused her to drop straight down twisting her legs beneath her, causing a compound open fracture (bone busting right through her shin). She was in the hospital for 6 weeks following this seizure and surgery. She was put on anti-seizure medication during that time. This point was really the beginning of a worsening overall in Michelle’s health. She had trouble healing from the bone break. She continued to have severe Crohn’s, painful arthritis, painful foot deformities, insomnia, and increasing grand mal seizures. Of everything that she had going on, the seizures were the most terrifying to us. We took her to five different neurologists to try to get her help for the seizures. All they could offer was more anti-seizure medications and brain surgery. We were told that she was at a high risk to die from SUDEP.

A few years ago I began researching medical marijuana, with an emphasis on CBD. I saw the CNN specials with Dr. Gupta and felt this was something that may be able to help. Michelle’s health was not good and continued to decline. She was on several strong anti-inflammatory drugs including Humira and Remicade, as well as very high doses of anti-seizure medications. She was feeding tube dependent yet severely overweight (steroids beginning at 8 years). She had horrific pain just to walk. She was in a wheelchair when outside of the home. It took two people to help her walk because she had to hold on. She continued to have grand mal seizures, clustering while she was sleeping to as many as nine at a time. She was repeatedly hospitalized for abdominal wall abscesses at the feeding tube sight. Her body couldn’t fight the infections because her immune system had been suppressed for so long. She continued to have seizures. She didn’t feel good. She was having horrible self-injurious behaviors because of pain. Michelle was completely debilitated at this point. None of her specialists could offer anything more for her. I had only one hope and that was to try medical marijuana. I had already been researching it off and on for several years. But I wasn’t sure where to start. I saw a presentation online from a doctor in California who was treating children with CBD, Dr. Goldstein, and we made an appointment to see her.

From the beginning of taking CBD we could see a difference. The first thing we saw was Michelle began to smile. We titrated weekly for a few months to reach a therapeutic level. The seizures began to decrease with seizure-free periods. Two months after starting CBD, Michelle began to taste food by mouth. Previously, she was feeding tube dependent with only rice crackers and water by mouth. Now she was tasting cooked food, pot roast with vegetables. Within a few months, we had her GI’s permission to discontinue tube feedings and feed only by mouth! So now Michelle was eating meat, chicken and a variety of vegetables!

Because of the constant infections, we had to consider discontinuing Humira. We stopped Humira but Michelle continued to improve with the Crohn’s disease symptoms. Although she was eating by mouth, she no longer was having chronic diarrhea. She began having regular bowel movements and still does! By the end of the first year, she was no longer showing signs of active arthritis. She began to walk more, lose weight and become very alert. She continued to have good seizure control with only occasional breakthroughs. I was able to get her into adaptive exercise classes. She lost more weight and began to improve overall. Today, she is no longer taking any anti-inflammatory medication. She is slowly weaning off of her seizure medications. Her seizures are well controlled. She had her feeding tube removed after 13 years!! Her doctors say her Crohn’s disease and arthritis are in remission. She has imaging and lab results showing her liver to be improving. She is able to sit through speech and OT therapy because her autism symptoms are lessening and she is able to participate now. She has begun using an AAC iPad device. She is happy and laughs with us. Her quality of life has improved by 1000%, and she is healing. This treatment has been a real life changer for Michelle.

Momma goat stopped breathing during a seizure after giving birth

Provided by RoC Care Specialist

Cool story from Ruth Ann in Alabama! I spoke with Ruth Ann who lives in rural Alabama, and suffers from Fibromyalgia and uses CBD. She has a small family farm and they have miniature goats. One of the goats went into labor and it was a really tough, many-hours-long labor. Eventually, the owner intervened and helped pull the baby out. Throughout that process, the momma goat began having seizures, and basically went into one long seizure.

The momma goat stopped breathing. The owner ran into the house and grabbed her CBD oil. She gave the 40lb goat 0.3mL of oil and curled up with the goat, as she waited for it to die. The CBD stopped the seizure, and three minutes later the goat was totally fine! She stood up and called for her new baby and the baby started nursing like nothing ever happened. Momma goat and baby are doing great!!

Note: Photo is a stock image and not one of Ruth Ann’s goats

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Our sweet boy has been given a chance to live

Provided by an anonymous family

I’m at a loss for words in how to truly express what your work has done for our son. He was diagnosed with generalized myoclonic epilepsy (with four different types of seizures) that has been very difficult to treat. He has failed many meds and at one point he was having 100+ seizures a day along with a lot of facial injuries due to the forcefulness of his myoclonic seizures.

He had been delayed in his speech and with the development of his epilepsy just before he turned 2 1/2, he had stalled, and at times regressed. He had started preschool only weeks before his first seizure and we had to end up pulling him because his epilepsy became too much for him to attend. He had his longest seizure of 16 minutes and had another seizure in the ER that night when he stopped breathing and they had to bag him to get him breathing again. We spent over half of that month in the hospital.

Our son has experienced a lot of ups and downs since that time, but it has been horrific watching our sweet boy injure himself and not be able to do things a boy of three should be able to do. We began using CBD oil and we have since titrated up to the 0.75 level. Since this last and final titration, we have experienced our miracle. It has been three weeks and three days since our son’s last visible seizure. We honestly were not sure if we would ever even experience a day without seizures again. Because of your dedication and hard work at helping families like ours, Our sweet boy has been given a chance to live.

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She is calling me Mom regularly when she has never called me Mom before

Provided by Jennifer’s mom

My 27-year-old daughter, Jennifer, has been taking CBD since July and she’s learning to talk. She’s playing with toys and is intact with her world. She follows directions. She can point with her finger. She is calling me Mom regularly when she has never called me Mom before. I’ve waited a long time to hear this, so very long! It brings tears to my eyes because it has been such a long road. She’s doing great. She has autism and limbic seizures. Her seizures are dramatically reduced. This is amazing.

I have my daughter back! I needed to tell you how much this means to me.

Thank you so very much.

After a few doses of CBD oil he was calm not stressed, and best of all the OCD and ticks ended.

Provided by an anonymous family

I wanted to let you know something very important and wonderful that just happened. My son is 14 and has suffered from severe OCD since about age 7 and his life has been impaired and he suffered terribly. At age 7 he also had a severe breakdown triggered by an increase in Zoloft. He ended up much worse and was put on Risperadol and Lexapro for a couple years it only worked for a short time, then he was put on Prozac. Nothing worked very well at all and he still had very bad episodes and motor ticks. We took him to many very good doctors and specialists but it wasn’t until this year that we got him to one that gave us a prescription after seeing no meds worked. We have known about Charlotte’s Web CBD since we saw the first CNN show about the Stanley Brothers. The oil worked like a miracle. After a few doses of CBD oil he was calm not stressed. And best of all the OCD and ticks ended. He’s been doing great, feels good, and doesn’t have any OCD problems or ticks. I am so grateful for the work you do and I’m hoping it will help others with OCD. God Bless you.

The last MRI shows a 25% reduction in tumor size

Provided by RoC Care Specialist on behalf of an anonymous client

Yesterday, a nice lady from Pueblo called to talk about her next order of CBD oil. During the conversation, she shared with me that she has been on CBD for 6 months and she is taking it because she has a brain tumor.

The last MRI shows a 25% reduction in tumor size. She says her primary care physician was furious that she chose to try cannabis.  She didn’t elaborate on that but says she doesn’t care because “IT’S WORKING!!!!!!!!”

I was sleep deprived for 6.5 years of his illness, my level of sleep now is intoxicating

Written by mom Linda

THIS IS THE BEST PART!!! NO, NONE, NADA… ahhhhh I could fill this whole block with just this and sit back in my chair and stare at it for days…truly. Isaac is doing MARVELOUS. NO SEIZURES SINCE OIL!!!!! Can I write it in the sky, or carve it in a pie?? His Neuro Doctor and I are reducing Keppra, he was on 4 a day huge amount 750 mg each we are now down to only one and Isaac will be free of it in one week. With each reduction we are increasing the oil a bit.

We have done so many things we have not been able to for the 13 years of his seizures. One being free movies in the fall at the Imax theatre. I thought he has done so well I think he could handle it if he uses his ear plugs (he could not tolerate an inside theatre, he is very optically triggered). We made 7 out of 9 of the free Saturday morning matinees they offered. Isaac thanked me each trip home after probably 20 times. He is the sweetest.

Each reduction of drug I see another piece of him emerge that has been buried for 13 years. He no longer requires sleeping in my bed on the weekend because most of his seizures would be at night. I was sleep deprived for 6.5 years of his illness, my level of sleep now is intoxicating. We are” Livin Large” I tell him.

I use the entire grant for his oil. Each month I face his oil or the mortgage. The grant is massive in our lives. I am grateful with my every breath and for Isaac’s every breath. My closest dear friends are amazed and in awe. They share in our joy.

He isn’t walking around like a zombie

Written by Taylor’s family

Taylor’s health has improved drastically since starting the cannabinoid therapy. He went from being on 8 medications, including psych medications, to just one medication and the CBD oil. The only pharmaceutical medication he is on now is a weaning off dose of his seizure medication. He’s happy, healthy, mentally stable (more so than he’s ever been), and is no longer overweight.

He isn’t walking around like a zombie. Meltdowns are about once every 3-6 months when previously it was 3-6 a month. The entire family has had a change. Our family dynamic went from chaotic to happy and healthy. For the past year, we have truly gotten to meet the REAL Taylor for the first time ever. He has about 98% seizure control. Without you, the grant, and this life-saving oil, Taylor would not have quality of life, would not be in school, could be in a mental hospital or possibly not be with us from constant seizures.

Thank you for giving our son a chance at life and quality of life. This therapy has breathed life into our son and the entire family. You gave us hope when hope was lost.

 

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