Author: jessica

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#RaisetheRealm 7 Days Left To $70K

The Selmeski family moved to Colorado in November of 2013 from East Tennessee so their young daughter with intractable epilepsy, Maggie, could legally try cannabinoid therapy. Back in 2013, many families moved to Colorado in search of legal cannabis.

[youtube https://www.youtube.com/watch?v=7TazlRaFDpc?rel=0]
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The Selmeski family moved to Colorado in November of 2013 from East Tennessee so their young daughter with intractable epilepsy, Maggie, could legally try cannabinoid therapy. Back in 2013, many families moved to Colorado in search of legal cannabis. You may have heard of Pot Pilgrims or Medical Refugees? Hundreds of families relocated in search of a miracle. Back then, it was required to have Colorado residency and a state medical cannabis card in order to obtain any cannabis products, including CBD. This was no small task.

When the Selmeskis moved to Colorado, Maggie was having up to 500 seizures a day. She had tried 6 different anticonvulsant pharmaceutical medications with no relief. Maggie became limp and lifeless, completely sedated on traditional “legal” pharmaceuticals.

Today, Maggie is enjoying 90% seizure reduction without pharmaceuticals. She smiles, laughs, and makes eye contact. She now attends school and finds creative ways to communicate with her family. All things that were not possible before cannabinoid therapy.

Maggie is now age 5, and her little brothers are Maddox who is 3 and Myles is 1.
#siblinglove #raisetherealm

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#RaisetheRealm 6 Days Left to $70K

[youtube https://www.youtube.com/watch?v=Bt3-C5YrfkU]

Looking at Chloe Levine, you wouldn’t know anything was “wrong” with her.  She laughs, smiles, and plays with her older sister, Shayla, doing anything a normal pre-teen would do.  Chloe had suffered a stroke in utero, probably early in pregnancy, and this resulted in hemiplegic cerebral palsy.  For the first 2 years of her life, she was not able to use the right side of her body until she had a stem cell transfusion with her own cord blood.

Chloe also has seizures, and she uses cannabinoid therapies to help keep them under control. She has tried both Lamictal and Keppra, which her mom says almost killed her.  Chloe would sit in the corner and scream for hours on end.

They decided to try cannabis oil because traditional pharmaceuticals were wasting her precious time and using something more natural seemed appealing.  Chloe’s family had heard many incredible stories of how THCA (the acid form of THC) oil could help children like her. Chloe’s neurologist calls her a miracle patient. She went from a sleep-deprived walking zombie, because her seizures kept her up all night, to a B student who once again has the will to tackle the world.

Chloe is now 11 and Shayla is 14. #raisetherealm #siblinglove

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#RaisetheRealm 5 Days Left to $70K

[youtube https://www.youtube.com/watch?v=4WqnfySaVCg]


The Brown family are natives of Colorado and Tyler has suffered from debilitating seizures since the age of 7 from a rare form of intractable epilepsy know as Lennox Gastaut Syndrome, and he also has cerebral palsy. Tyler has been through more than most of us. He had a VNS (vagus nerve stimulator) implanted age at 9, emergency Corpus Callosotomy (for those of you who don’t know what that means the surgeon cuts the corpus callosum, which is the large fiber bundle that connects the two sides of the brain) to stop status seizures at age 10.  Tyler also had a G-tube placed at age 10 because eating/chewing would trigger seizures and aspiration.

Tyler’s family tried 12 different pharmaceutical medications to control his seizures. Every single one failed. After the Corpus Callosotomy, two medically-induced comas, and unresponsiveness to rescue medications, there were no other options. This is when Tyler’s mom learned about medical cannabis.

She says it was their “only hope”.  Since using cannabis, Tyler reduced the number of pharmaceutical medications, and he is much healthier overall. No more frequent pneumonia and other illnesses landing him in the hospital. Until recently, the cannabis therapies have kept Tyler’s seizures at baseline.

Now that Tyler is 16, he is dealing with puberty, which means an increase in hormones. This has caused an increase in seizures that not even cannabis can control. Tyler’s parents have tried CBD alone, THC alone, and a combination of both. THC was very useful for Tyler’s withdrawal symptoms when weaning his pharmaceuticals.

Tyler’s mom, Rita, would like to add “a huge thanks to Realm of Caring, the Stanley Brothers, Heather and Paige for all the support and knowledge while going through this process. We couldn’t have done it without them!”

#RaisetheRealm #SiblingLove


TYLER2
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#RaisetheRealm 48 HOURS LEFT to $70K

[youtube https://www.youtube.com/watch?v=bGGKGrKVGrA]

Jason is a retired Army Veteran who has been deployed overseas several times. He suffered a traumatic brain injury in a bombing and has since dealt with depression, anxiety, PTSD and severe pain.

VA doctors were quick to heavily sedate him with an army of pharmaceutical drugs including medications for pain, depression, and anxiety. Once these pills took effect, Jason started gaining a lot of weight, his anger increased, and his self-esteem drastically decreased. He then started getting angry at the man he had become. He felt trapped like he had no way out. He thought, “Why wasn’t I being supported in my recovery?”  

Jason called himself “a mess”.  He was forced to stay on the medications from the VA because if he didn’t refill them each month he was at risk of losing his VA benefits. On more than one occasion, suicidal thoughts plagued him. He had no interest in life. He didn’t see the point in living such a miserable existence.

Jason’s anger was out of control. He didn’t enjoy being around his child or his (ex) wife. He would tower over his toddler on purpose, instead of kneeling down to their eye level.  Jason yelled all of the time, his child was scared, and his wife at that time decided to walk away. He moved in with his brother-in-arms Noah at that point and completely isolated himself. He wouldn’t join Noah and his family for dinner, instead, he would eat alone upstairs in his room and sulk.

Jason turned to alcohol to deal with his emotions and combined with his pharmaceutical medications, it was a nasty cocktail.  This started his downward spiral all the way to rock bottom.

Jason has always known about cannabis but it was never an option for him while serving active duty. On top of that, he was frequently drug tested as active duty and as a Veteran because he was prescribed opiates.

Since using cannabis Jason can manage all of his symptoms and his mental health is stable. He was able to decrease his pharmaceutical medications and stop a lot of his medications altogether.

He points out that he is never “high”. He likes to medicate before heading to the gym for his morning workouts. Cannabis helps relieve his anxiety and decrease his pain so his workouts are more effective. He is more loveable, calm, and overall happy.  Jason now enjoys being with his children and is happily re-married.

#RaisetheRealm #SiblingLove

JASON 1

 

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#RaisetheRealm 24 HOURS Left to Raise $70K

[youtube https://www.youtube.com/watch?v=AIvCoyHIYOA]

Ezra’s story is an incredible one, to say the least. This little boy has been through more than most adults will ever imagine in a lifetime. Ezra suffers from a variety of different conditions starting with seizures from a rare disorder called Lennox Gastaut Syndrome (LGS).  He also has dystonia, chronic pain, muscle spasms, chronically dislocated hips, osteopenia, bilateral amblyopia, scoliosis, possible metabolic disorder, gastroparesis, GERD, and multiple food allergies.

His seizure disorder began just a few days after birth and the subsequent conditions are the result of a variety of reactions over time. Ezra has undergone many surgeries including a feeding tube placement when he was only 2 years old.  During that time samples were taken from his liver, thigh muscle, and skin to test for a mitochondrial disorder.

Over the years, Ezra has been on more than 40 different prescription drugs ranging from seizure medications to heavy duty pain medications such as fentanyl patches, morphine, ketamine, muscle relaxers, and the list goes on.

For such a young, fragile body how could any of these pharmaceuticals be a healthy option?  His organs were failing from all of the harsh and toxic chemicals. His family knew it was time for a change.

Like many families in this Raise the Realm project, Ezra’s family moved to Colorado Springs in July 2013 from Boiling Springs, South Carolina to get safe and legal access to medical cannabis. Ezra’s mom says, “It was a no-brainer to try a natural healing route to allow his body to learn to function and thrive as God intended.”

Since 2013, Ezra has definitely been thriving from cannabis therapies!  He uses cannabis oil made with a combination of high THC and low CBD and this has given him a 90% reduction in seizures. Wait, there is more because Ezra’s list of benefits continues to grow each day. Cannabis also keeps his chronic pain manageable, is improving his bone density, healing his gut and minimizing his reflux, improving his vision, and reducing his muscle spasms by 98%.

This medicine is providing amazing mental clarity allowing Ezra to express himself with the use of an eye gaze communication device. He continues to learn several concepts which correlate to those of his peers. He has been able to develop a system of communication with his family members when a communication device is not available. Eye contact, smiling, and nonverbal communication are things that were not possible before cannabis therapy. When we asked Ezra’s mom, Marisa, does she have anything to add? “Cannabis is lifesaving medicine!” she exclaims.

Ezra uses a combination of THC and CBD oil, cannabis leaf juice, rosin, rescue vaping or nasal spray, and homemade topicals. It took a couple of years to find the perfect concoction, but Ezra is doing better than ever. He continues to grow and develop and his body is healing after the use of the pharmaceuticals. At one point he was in hospice care, and now he exudes radiant health!

Ezra is age 6, his older brother Noah age 9, Odin is 2 and baby girl Selah age 7 months.

RaisetheRealm #SiblingLove

EZRA 1

 

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Breaking Ground with the Stanley Brothers

[youtube https://www.youtube.com/watch?v=3y1oF5QzGkg]

 

Listen to Breaking Ground with the Stanley Brothers debut episode with CNN’s Dr. Sanjay Gupta on Apple podcasts or wherever you listen. With the Stanley Brothers, Sanjay talks cannabis, the opioid crisis, why whole plant medicine matters, and a bold letter he wrote to Jeff Sessions and the Trump Administration. Listen here: bit.ly/BGwSB

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Let’s Talk About Epidiolex

Today was a big day in the world of cannabis. The first ever plant-based pharmaceutical drug made from cannabis rich in cannabidiol (CBD), Epidiolex, was scheduled by the DEA. You’d think it would be scheduled as a II or III because “marijuana” is schedule I (no medical value with high potential for abuse/federally illegal). Not the case. Epidiolex was scheduled as level V the lowest possible schedule – least restrictive – which legitimizes the proven health benefits of CBD and its low potential for abuse. To give you a comparison, Epidiolex is in the same category as cough syrup with small amounts of codeine and yes, it requires a prescription. The FDA approved the drug in June for two rare and severe forms of epilepsy, Lennox Gastaut Syndrome (LGS) and Dravet Syndrome. It is possible that doctors will write prescriptions “off-label” for other epilepsy conditions that can benefit from CBD.

There is a lot of confusion surrounding this topic so we wanted to clarify a few things for you. As we learn more we will update this article.  First, this doesn’t change anything for those of you who are using whole plant botanical extracts made from industrial hemp. The molecule CBD did not get scheduled today, only the drug Epidiolex. This motion by the DEA does allow for future FDA approved cannabis-derived pharmaceuticals as long as the THC limit is less than 0.1%.  CBD did not get patented, you can’t patent a plant. CBD is not illegal if you are following your state laws, plus we have the added protection from the Farm Bill and Omnibus Bill from federal prosecution. Accessing CBD is a personal decision and you should make the best decisions to improve the quality of life for you or your loved one.

Currently, there are synthetic (man-made) forms of cannabis pharmaceuticals Cesamet and Marinol on the market which are scheduled as II and III and are prescribed to chemotherapy patients with vomiting and severe nausea. These drugs are THC based, not high in CBD. If you live in a medical or recreational cannabis state you can access THC products under state laws, although it is still federally illegal with “marijuana” as schedule I.

Having Epidiolex on the market is a move in the right direction because the US government clearly recognizes the medicinal benefits of cannabis. FDA approval also means insurance companies should cover the cost because it is expected to be pretty pricey. If they don’t (and you may need to fight for coverage)this may turn into an unaffordable option.

Fun Fact:
Did you know cannabis was available as a pharmaceutical drug in the US until 1947? Then reefer madness happened and the public was largely misinformed. We are thrilled cannabis is getting her positive reputation back!

Did you know:
We are conducting the largest observational cannabis study in the US in collaboration with Johns Hopkins University. In our epilepsy population, the average dose of CBD is 2mg/kg (the range is 7mg CBD-600mg per day). The starting dose of Epidiolex is 5mg/kg. Their studies titrated participants up to 20mg/kg or higher.  It is really important to know and discuss this huge variance with your doctor.

If you found this article interesting, please share it with your friends and comment below!

[youtube https://www.youtube.com/watch?v=IJNLGIr37Ls]

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#HopeMatters Meet Paula and Jordan

Episode 1 of 7

[youtube https://www.youtube.com/watch?v=XVLnq4-Dvqs]

Tune in tomorrow to hear the rest of Paula and Jordan’s story.

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In 2013 Paula and Jordan made a decision that would forever change their lives. Leaving their family and friends in Ohio and moving to Colorado was something they never imagined. All in hopes of a treatment to control Jordan’s seizures caused by a catastrophic form of epilepsy called Dravet Syndrome.

Her seizures started when she was 6 months old and by the time she was 18 Jordan had tried a dozen different pharmaceuticals and nothing controlled her seizures. On her worst day, she would have more than 70 grand mal seizures in a 12 hour period. Jordan’s mom, Paula, was desperate to find some relief for her struggling daughter. “She’s living, but she’s living in a zone,” says Paula. Jordan was placed on palliative (hospice) care and the doctors said there wasn’t anything else they could do.

Paula heard about Charlotte Figi’s story and her success with cannabis, specifically CBD products, for Dravet Syndrome. But Paula didn’t know anyone in Colorado and thought it was crazy to pack up their lives and leave her husband and their other daughter in Ohio.

That’s when Paula said she asked for divine assistance and their path was made clear. Within a couple of months, they moved to Colorado and got started with cannabinoid therapies right away. Since then, Jordan has been able to wean off two pharmaceutical medications, one highly addictive. Jordan has improved cognitive function and better quality of life.

Quality of life matters.  You can make a lasting impact for a family like Paula and Jordan’s by donating your time as a volunteer or by making a tax-deductible donation to the Realm of Caring.  With your support, the Realm of Caring can continue to offer programs and services to thousands of families around the world who are looking for guidance with cannabis therapies.

For just $1/month you can be a RoC Friend and support families like Paula and Jordan’s. Join us today.

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#GivingMatters Part 2 of Paula and Jordan’s Journey.

Episode 2 of 7

[youtube https://www.youtube.com/watch?v=n_Exo7qUbx4]

Tune in tomorrow to meet our next family, the Jergers, and hear their incredible story!

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We hope you feel inspired to make an impact after watching part two of Paula and Jordan’s story. Today, when Jordan has a seizure it is much less severe and overall her life has been positively affected by cannabinoid therapies. Paula is thrilled they made the move out West more than 5 years ago to try a plant-based, non-toxic option. “She’s never asked to go back home,” says Paula. They were one of the first families to relocate to Colorado before hundreds of families with medically fragile children migrated here. These families were known as “medical refugees” for leaving their home-states to try an option that wasn’t available to them at the time.

In the United States (at the end of 2018) we have 33 states plus Washington D.C. with medical cannabis laws, and 10 states which have legalized recreational cannabis, so hearing the term “medical refugee” is a little archaic, although it’s still happening as you’ll discover in episode three of this series tomorrow. It took families like Paula’s to completely uproot their lives and instigate major changes surrounding the medical cannabis stigma and legalities.

Without sacrifices like theirs, would more than half of our country have medical cannabis laws? These fearless families made a huge impact within their communities and beyond. Will you consider making an impact before the end of the year?

You’re probably asking, where does my donation go?

By donating to the Realm of Caring you are supporting education, research and grant programs. To date, donors have enabled Realm of Caring to grant more than $300,000 in financial assistance to families in need, and invest over $600,000 in first of its kind research with Universities like Johns Hopkins, Harvard, and the University of Pennsylvania studying the health outcomes of CBD and cannabis.

Becoming a RoC Friend for $1/month is the most impactful way to give. Become a Friend today.

One of greatest gifts you can give is your time! We would love if you’d consider volunteering for Realm of Caring! Read more about what volunteering looks like.

Tune in tomorrow to meet the Jerger family and learn why they fled the state of Indiana.

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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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