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Devin was born in 2011 and was diagnosed at 2 months old with a form of Epilepsy called Cortical Dysplasia in the right occipital lobe. Devin is a Medical Marijuana Patient in Arizona. After 3 brain surgeries, Devin’s dream was simply to be able to go to school. In 2017, JBMJ International Inc. first began to provide industrial hemp preparations, at no-cost, to Devin. Since then, Devin attends school. His seizures have lessened in duration and frequency but. he still faces more surgeries.
We pray for Devin’s future.
Scroll down to read "Devin's Story: He is Strong and Courageous by Andrea & Russel Light
Devin’s Dream Premium Hemp Oil (DDPHO) is a minimally processed blend of Organic Hemp Seed Oil and Full-Spectrum Hemp Extract. It is rich in Terpenes and (Phyto)Cannabinoids with only a trace amount of THC – often below laboratory detection levels which are listed as ND (Not-Detected). Please see the attached Certificate of Analysis.
DDPHO has a very high ratio of CBDa to CBD, as well as high amounts of beneficial Terpenes. CBDa and Terpenes are typically not seen in commercial Hemp Oil products. Most common, hemp extraction processes, destroy the Terpenes and convert the CBDa to CBD.
JBMJ International’s proprietary processes maintain the natural cannabinoids to the greatest extent possible, thereby enhancing the “Entourage Effect” on the bodies’ EndoCannabinoid System (ECS).
Devin's Dream Premium Hemp Oil is lab tested by a 3rd party lab. We print a QR Code with Lot # on each bottle linking to the actual Certificate of Analysis.
Devin’s Dream Premium Hemp Oil contains no Coconut Oil, MCT, fillers, isolates or additives.
A portion of JBMJ International, Inc sales revenue is used to continue to provide Devin, and other medical patients, no-cost or reduced cost Industrial Hemp Products.
300mg/.5oz/15 ml dropper bottle
Full Spectrum Hemp. No fillers, isolates, MCt or coconut oil.
QR Code on label with Certificate of Analysis
Contains: Hemp Seed Oil and Hemp Oil Extract
July 14, 2011 was the most anticipated and exciting day of our lives, our son Devin Michael Light was born. My pregnancy and his birth were normal, and the doctors said he looked healthy, little did we know our lives and his would never be "normal".
As a parent, you dream of what kind of life you might have with your kids, what sports they will play, what trips you will take, what kind of person they will grow up to be. But sometimes, life isn't what you dreamed it would be.
Sometimes we are given a path we never imagined. My husband and I were given a path of disabilities, hardship, and obstacles. Let’s all be honest, no one dreams of their child having to struggle from birth and watch them hurt daily.
But in those moments, we have a choice. We can choose to fight for them or not. I am happy to say we chose to fight, and we are blessed to have a team of warriors behind us praying and fighting with us daily!
I’ve learned that living with a disability doesn’t necessarily mean you live a hard life that is filled with only pain and rough days. It’s also filled with joy and appreciation for the short life we have here on earth. It’s filled with tough decisions, but it also helps you to grow and become tough yourself, learning to fight for what is most important and to be able to let go of the little things.
God has given us eyes to see the beauty in the middle of the storm.
First Sign of Problem-2 Months
The day of Devin's two-month vaccinations, my sister noticed his eyes moving a little funny. At first, it didn’t seem to be a big deal and we weren’t alarmed. A few days later at church, a friend was holding him and made a comment that his eye movement resembled a type of seizure. She told me that her brother has epilepsy and she was familiar with seizures.
At this point, we became concerned, so we took him to his primary care physician the next day. She agreed; the eye movement looked seizure-like. After a long and horrible day at our local hospital, we had no confirmation either way.
They had never done a pediatric MRI before and, long story short, Devin had an adverse reaction to the sedative (Versed) that they gave him so, the MRI was cut short.
A couple weeks later we were able to get an Appointment at Phoenix Children’s Hospital (PCH) to have an electroencephalogram or EEG done. Devin was so good for them and again, we weren’t too worried. They told us we would have our results in about a week.
Three days later, I got a call from Devin’s Primary Care Physician telling us to pack our bags and go back to PCH immediately! Devin’s EEG was abnormal. He needed to be admitted into the hospital, via the Emergency Room. He had seizure activity and needed additional testing as soon as possible. His doctor called ahead to PCH so they would be expecting us.
At this point, my heart began to break, and I became very worried. I started to think, “What did we do wrong and how did this happen? Devin was perfect! Did I do something to hurt my baby?” All this and more went through my head. But we had to make a choice-to fall apart or, be strong and help him in any way we could!
The Diagnosis-3 Months
After three days in the hospital, another EEG, MRI and a CT scan, at just 3 months old, Devin was diagnosed with a type of epilepsy called Cortical Dysplasia in his right occipital lobe.
Cortical Dysplasia is a physical malformation of cells that form in the brain. PCH doctors could not give me a definite reason why this would happen and why, he didn’t have seizures until after his vaccinations. The occipital lobe affects the vision, especially the left peripheral vision in both eyes.
I remember standing in the hall with his neurologist, listening to her explain all of this to me, while looking at the MRI on her computer, and feeling like my world was crashing in. I couldn’t believe that my sweet little baby was having seizures! As I looked at this image, I could clearly see the difference in his left and right brain.
I was terrified for him and myself! I did not feel strong enough to handle this and it took time to wrap my head around all this new information that I was receiving at such a fast pace.
The doctors at PCH immediately put Devin on Phenobarbital, an extremely addictive medication that is supposed to work well for babies who have seizures. Like the Versed, we noticed adverse reactions and an addictive attitude towards the drug almost immediately.
This was the first of many debilitating pharmaceutical medications our sweet boy would have to take in his life.
Pharmaceutical Side Effects
We soon found, that Devin would have negative side effects from each new pharmaceutical medication. He hurt himself and others. He would have inconsolable screaming fits during the day and night. He could not sleep more than a couple of hours at a time and, he was still having seizures.
One terrible night, it was so bad that he screamed for hours. It seemed more like a bad dream. He was non responsive. We even tried to take him outside, to see if the cold would pull him out but, it didn’t.
We used music, the sound of the shower, or, anything we could think of, but nothing worked. It felt like we were failing at any, and every, attempt to help our little boy. We tried multiple medications and used different combinations of each of them trying to control his seizures, with no success.
Devin had become drug-resistant (pharmacoresistant), meaning that drugs would never help him be seizure free.
Surgery # 1: Age 2
August 2013 was Devin’s first brain surgery. The surgeons removed about a quarter-sized round area of abnormal brain tissue from the occipital lobe and did not see anything else abnormal. The removed tissue was a different texture and color from the rest of his brain.
Amazingly, Devin was seizure free for 14 months. Those months were some of the best he's ever had in his life. He thrived in the way that any normal, healthy kid would. It was beautiful and amazing to see our boy have no pain and do all the fun things other kids were doing. It seemed that the life we dreamed of and others were living, was going to be attainable for us.
Two months after our daughter was born on Oct. 17, 2014, Devin’s seizures returned with a vengeance. At this point, our only choice was to increase his pharmaceutical medications again.
Again, it didn’t work.
We felt like our hearts were breaking all over again for Devin.
Cannabis for Seizures: Age 3½
Thankfully, a wonderful friend of mine introduced me to another medication option for Devin. Her son was using cannabis and CBD for his seizures. Her son was having more and more seizure freedom every day.
I am going to be completely honest and say I was a little leery of using cannabis and CBD. How would it affect Devin and what would people think about me and our family? But, when your child's life is on the line, you do what you need to do to save them, regardless of what others may think of you.
This is one of the moments we learned to be stronger than the “opinion” of others, including doctors. Because of the shortage of research and information regarding cannabis and CBD in the United States, it brought us a lot of hurdles and hoops to jump through. Also, there was negativity from both doctors and people around us from our decision.
Medical Marijuana Card: Age 3 1/2 s
Despite all the craziness around us, in March of 2015, Devin smiled the cutest smile for his MMJ cannabis card. We went into this with little knowledge of how to medically treat him. There really wasn’t much research in the U.S. We had to really dig deep on the internet and locally to find the right dosing and types of cannabis and CBD used for epilepsy.
We had to basically become scientists and just figured most of it out on our own. We researched everything we could, to learn about cannabis and hemp plants, and how they work for epilepsy. Even though this was a lot of work and a little stressful, we knew this was the right path for him.
At our local dispensary, we purchased a pre-made cannabis tincture and a high CBD flower that we made into an oil for Devin.
On the first night, Devin slept 11 hours! Within days his seizures lessened drastically, and he went 4 months seizure free!
Wonder and Frustration
I couldn’t help to wonder what Devin’s life could have been like had we found cannabis and CBD prior to all the debilitating medications he had to take and the surgery he had to endure? What more could this medication have done for him?
Through this process we learned that CBD helps cell regeneration in the body, including the brain. What synthetic pharmaceutical medications destroy in the body, cannabis and CBD can rebuild.
All the negative behaviors he learned because of the pharmaceutical medications and the seizure activity could have been avoided! Now we have years to undo. It angers me, and breaks my heart, to think this could have all been avoided if we as a country weren’t so offended by something different.
How many others need to suffer and die before we make a change? Do we let our offended hearts and minds control our decisions or do we put our differences aside and try to make life better for us all and our future generation’s all over the world!
Cannabis and CBD started to save our son’s life.
Seizures Return: Age 4
Then, a day after purchasing what I thought were the same products as before, Devin had 30 seizures in just one day. After contacting the dispensary, they told me they stopped testing their products because by the time the test results came back, the product was already gone.
You can imagine my anger and frustration with them! Why would they sell a product when they didn’t know what was in it? And why, would they sell a child, a product that might not work? We weren’t using this to get high, we were using this as a medication for our son's seizures.
We learned the hard way that in Arizona and many other states, there were no laws or regulations on testing products. If we wanted them tested, we had to do it ourselves after purchase or search for a dispensary who would test. Had there been regulations for testing products we would have saved a lot of money, wasted time and stress of losing our son. We are so thankful that there are laws right now going into place for future families, but we will never get back what we lost.
Within a matter of days, we were lucky to find AZ Natural Selections. They got in touch with me immediately and were able to get Devin on another oil that provided some relief. They test their products, so we knew we were getting the same thing every time.They also covered the cost, which was a blessing. Cannabis is expensive and our funds were already running thin.
Through this we learned that not all cannabis or CBD is the same, not even close.
With the cannabis plant there are different strains. There is an Indica that is thought to be a downer, a Sativa that is a stimulant and then there is a hybrid of the two. And, with the hybrid you could have an Indica dominant or a Sativa dominant plant.
I know this sounds completely overwhelming and it was. I feel like I should have a degree by now in what I have learned and the time I’ve put into learning it all. We learned quickly that what worked for one child, may not work for another.
Devin’s journey to find seizure freedom with cannabis and CBD was just beginning.
Even though we are grateful to them for helping us, we learned that Devin doesn’t do well on Sativa strains. This dispensary only made their medicine with the Sativa plant. Sativa was stimulating his brain too much causing the brain activity to spike more often , which caused more breakthrough seizures. Unfortunately, we had to stop using this product.
Seizures Getting Worse-Age 4-5 Years
At that point in time, he was having about 20 to 30 tonic-clonic seizures on a bad day. (Tonic-clonic seizures, as they are now known, used to be called grand-mal seizures). Devin was having many absence seizures, auras, and myoclonic jerks. He was having seizures that don’t even have a name that made him collapse and stop breathing, with eyes dilating but no jerking.
We found a product from a local company and it seemed to help. They worked directly with us to help find the right dosing and covered the cost. They helped in any way possible to try and decrease Devin's seizures.
Unfortunately, they only provided coconut-oil based hemp products and not cannabis. Our research and experience told us Devin needed both cannabis and CBD products. We still had to find and make our own cannabis tincture from a flower. After using their CBD product for some time, we realized Devin was forming an allergy to coconut oil. He was throwing up every day so unfortunately, after a couple years of trying we had to stop using their product because of his allergy to coconut oil
Some Relief: Age 4-5
We had a couple of years of ups and downs with cannabis, but Devin’s seizures were still better than before. He was having more seizure-free days than on pharmaceutical medications and the upside was he didn’t have any negative side effects with cannabis.
He didn’t hit himself or others as much, he was sleeping and eating again. It was amazing to see him act somewhat normal, I forgot what that looked like for Devin. We were able to keep his pharmaceutical medications to a minimum and were able to see our boy come back to us.
Waves of Seizures
Surgery # 2: Age 5
Unfortunately, it was still not enough, his seizures would come back in waves and we knew we had to do something else. In June 2016, one-month shy of his 5th birthday, we opted for his second brain surgery but this time with a grid placement to help locate the microscopic cells they couldn’t see with the MRI.
This surgery was two surgeries in one. First, they opened the skull and placed a series of grid sheets with tiny wires over the brain tissue that were connected to a monitor and then lightly replaced the skull and wrapped his head in bandages to keep the electrodes in place and the skull in place. He had to stay in bed for a week with induced seizures to gather as much information as possible about the origin of the seizures.
Second, after receiving all the seizure information, they went back into his brain, removed the grid and resected all the brain tissue they found that was abnormal. The doctors were unable to find the location in the brain causing the first 15 seconds of his seizure activity so, there was no definite way to give him seizure freedom.
The surgery was unsuccessful, and his seizures became more intense and frequent than ever before. He started to take on new seizure types and they were lasting longer.
In the next few years Devin would have to take two emergency helicopter trips to PCH and many more emergency visits to the hospital. They did more overnight EEGs and MRIs. The doctors believed the right side of his brain was possibly teaching the left side how to seize but, they couldn’t be sure without having more tests done.
Unfortunately, PCH didn’t have the testing equipment available and insurance wouldn’t pay for out of state testing.
Medical Ketogenic Diet: Age 6-7 Years
Another method we tried for Devin was the medical Ketogenic diet. This was not the “fad keto diet” everyone is trying these days; this was the medical diet that is watched strictly by doctors with lots of bloodwork and many pills to regulate the unbalance of nutrients he was not receiving.
He was on a strict 4:1 Keto, which means for every 4 fats he was eating, he ate 1 combined carbohydrate and protein. He was eating 80% fat, 10% carbs and 10% protein for each meal. We had to weigh everything that he ate by grams and had to carefully study every ingredient.
This was probably the hardest thing we have had to do yet. If he had eaten any sugar it could throw him into a seizure that you couldn’t stop and could induce a coma.
But there was a lot of success with keto and seizure reduction, so we tried it. It didn’t work well enough but, it did show us that sugar was a trigger if ingested the way society eats now. So, after a year we took him off and now keep him on a whole foods natural sugar diet and eliminated those sugar triggers.
Over that year Devin lost a lot of weight and was not eating well. Cannabis became more than just a seizure reducer, it also increased his appetite, whihc as a key component of not having a feeding tube placed.
C2W - Cannabis to Water: Age 5 to Present
In between the second surgery and keto diet, by the grace of God, we found C2W via a friend. C2W was different than anything we had ever used before because they were making the cannabis and CBD into a water-soluble solution that could be further diluted.
Devin was now absorbing more of the cannabis and CBD than he was able to with the oil-based tincture. And because they test each batch, it remains consistent, which meant it is the same every time.
This was a game changer for Devin!
The founders of C2W worked directly with us to find out what Devin's perfect mix would be. We no longer have to worry about what our son is getting, which gives us peace of mind. His seizures decreased to approximately 15 seizures on bad days and this is rare. Devin now has more days that are seizure free than he has ever had before.
If he does seize it’s because of a specific trigger such as full moon cycles, low pressure systems, specific frequencies and noise or sickness. The length of the seizures started to decrease and we were able to get more control of his seizure times. Devin started to sleep even better than before, he was drinking more water, eating better and gaining weight, his attitude and sweet demeanor were coming back, and he was able to go to school. He loves school and it would make him so sad to miss it because of his seizures.
C2W was giving Devin something no other cannabis, CBD or pharmaceutical ever did before: more and more seizure freedom.
Devin still has rough days and when his triggers hit, it is still hard to get those seizures under control.
Sometimes increasing his cannabis and CBD when his triggers hit can help and sometimes it doesn’t, but he has a lot of triggers.
During an unexpected helicopter trip and stay to PCH, we proved that when we take him completely off the C2W cannabis and CBD, he would have more than 60 seizures a day. And as soon as it was back in his system they decreased.
This stuff works better than any other cannabis and CBD we have ever tried. To be honest, it was extremely frustrating over the years to watch other adults and kids use other CBD product and it help them, but it wouldn’t help my son. I’ve learned what helps one person at a specific dose and strain may not work for another.
But C2W was different - it was helping Devin and others with completely different disabilities and diseases.
The Next Challenge-Age 7-Present
We have worked with C2W for a couple years now but for some reason we still couldn’t control those breakthrough seizures. In January 2019, we were finally able to have a Functional MRI (FMRI) at PCH. This test was previously unavailable to us because the state did not have this scanner until now, and because Devin only has state insurance, they wouldn’t pay for out of state tests.
The test revealed and confirmed the doctor’s suspicion that his seizures were not just originating in the right occipital but also in the right temporal and parietal lobes, with abnormal activity now happening in this left temporal region.
This information is a parent’s worst fear- receiving a report that if the other side of the brain starts to seize, those seizures could take his life.
We were told Devin had two options-either a TPO resection (removing the three lobes affected on the right side of the brain) or, an RNS implant (responsive neurostimulator). The surgeries had not helped previously so we were not ready to go that route without trying other noninvasive options first.
There was one more scan called a MEG that we had not done yet and Arizona still did not have their own. This is like and MRI and EEG combined but without the loud noise of an MRI. All the patient needs to do is stay still for about an hour. Our doctors told us we had a better chance of winning the $5 million jackpot lottery than getting his insurance to pay for this out of state test at UCSF in San Francisco.
Well, at this point what did we have to lose? We had to at least try to get this scan. We hadn’t given up yet and weren't about to start! After calling the insurance company and UCSF and our doctors, we gathered all the info needed and sent it in to insurance.
Praise God it was approved!!!
Devin is the first ever patient with state insurance to be approved for a MEG scan. He was now able to have what is called a Stereo-EEG (or SEEG) done to hopefully find a way to safely and effectively place the RNS device and not cut out any more brain tissue.
Over time, the RNS device will learn his seizure pattern and potentially stop them. It was a surgery, but it was necessary and not a resection. So, we scheduled both the MEG for June 5th, 2019 and the SEEG for June 18, 2019.
I could write a book on the miracles God did with the MEG and SEEG alone.
The MEG malfunctioned about 2 weeks before our appointment. If we didn’t have the MEG info in time, we were going to have to push back the SEEG to September.
I realized if God could get it approved then he could fix it. And Praise God it was fixed in record time.
That only gave UCSF about a week to read the information and get it to PCH before his SEEG. This usually takes about 6 weeks, but God moved, and it was done in 1 week.
The MEG test along with the FMRI gave Devin’s doctors more information about his seizures than they ever had before. His neurologist was so excited and couldn’t believe everything that was accomplished for Devin.
SEEG-Surgery #3 -Age 7 Years
The SEEG was done at PCH. This is a surgery where they drill 10 holes in his skull and place depth electrodes into the brain tissue. It sounds intense and really is, but, easier on the patient than the grid placement they did prior. The SEEG provided the in-depth info that we needed.
The results from the last two scans told them exactly where to place these depth electrodes. It usually takes about 1 to 3 weeks to get all the seizure information they need and that’s what we prepared for.
We took him off his cannabis and CBD to help induce seizures for the scan and within 36 hours he started seizing. Within 6 hours of seizing the neurologist came in and stated they received all the seizures they needed and to immediately put him back on his cannabis and CBD.
In 6 hours, PCH Doctors found what they call a seizure focus- the area of the brain where the seizures originate. The focus was found unfortunately, in his left hippocampus and amygdala, the brain area that controls long-term memory and emotion.
His readings showed that those areas were spiking every 10 seconds. Then, seizures would break through and spike through his brain back to his occipital lobe and up to the parietal and frontal lobes, as well as sending spikes to his left hippocampus.
This is what they were looking for 3 years prior, and they couldn’t see. This changed everything!
Devin was now a possible candidate for a procedure called laser ablation. This can only be done if there is a seizure focus identified. It is less invasive procedure and it has exceptional results.
God was making a way where there seemed to be none in literally every aspect of Devin’s Journey!!
Laser Ablation-Age 8 years
Devin is scheduled for the laser surgery on August 15th, 2019. I was telling a friend that even amid all this chaos and ups and downs I wasn’t scared anymore and felt peace, you know that kind of peace the bible talks about that surpasses all understanding.
I feel that peace, it’s hard to explain the feeling and, it doesn’t make sense with all the hurdles still in the way. I should be frantic, but I am not! This has been a blessing for our son and us. We are so thankful for all the miracles God has done and bringing us our C2W family and everything they are doing to help our son.
Little by little we are helping Devin have as normal a life as possible.
C2W has been a huge help with Devin and I don’t know where we would be without it. To be completely honest I am not sure my son would be alive today without cannabis and CBD. It has given him time and still is. It is giving him a chance to be a kid and have a life.
We have made more progress toward seizure freedom than with anything we have tried before. Devin completed kindergarten and first grade with only some reading and writing deficits; mathematically he is at or beyond his peers. Cannabis and CBD helps him cognitively progress and helps his speech progress, as well.
He has been able to make friends at school and church. He has a lot of autistic tendencies, according to doctors not enough for a diagnosis but enough to cause stress for him and us. And again, cannabis and CBD help with those moments and reduces a lot of melt downs and over stimulation for Devin.
He's the most-friendly person I know and loves to talk to anyone who will listen. He plays and fights now with his sister, something he never did before. He can build amazing gravity-defying buildings, kid-sized houses and more with his Duplo Legos. He has been given a chance to be a boy, have fun and enjoy his life.
Devin is one of the sweetest kids you will ever meet. He literally loves everyone and brings so much joy to our lives and others. He says he wants to make people happy and he does just that every day. He still lives with seizures and endures pain nearly every day, but he always has a smile on his face, and never once has he let epilepsy bring him down.
He is a blessing from God, and I thank Him every day for our son. What epilepsy has tried to steal and destroy in our son, God has given back to us via many miracles, including cannabis and CBD. He is awesome, he is a fighter, he is our warrior son!
“Have I not told you? Be strong and courageous. Do not be terrified; do not be discouraged, for the Lord your God will be with you wherever you go.” -Joshua 1:9 NIV
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Devin's Story, written by his parents, Andrea and Russel Light, is provided in the hope that other families can learn from their experiences. It is not intended to provide medical advice, treat,,prevent, or cure any illness or disease. Always consult a Medical Professional for illness or disease guidance.
Easy Drop Conversion (approximate)
1 ml (milliliter) = 1 g (gram) = 1 cc (cubic centimeter)-based on water
1 ml= 1000 mg (milligrams)
1 ml = 20 drops
15 ml bottle contains 300 Drops
30 ml bottle contains 600 Drops
1. Find the Total Cannabinoids from the Certificate of Analysis
2. Divide the Total Cannabinoids by 20 (drops)
3. Result is the amount of total mg per Drop
Coming Soon !!