A New Hope

CANNABIS OIL SAVED MY DAUGHTER'S LIFE.

I say that with conviction.  I was skeptical it was going to have an impact, but I was seriously wrong.  The changes that manifested in Rhythm were stunning.  Here is the story of Rhythm's New Hope.  It's called Haleigh's Hope, and we are grateful to the awesome people at the Flowering Hope Foundation for their guidance in it's use.

BEFORE HALEIGH'S HOPE

We were winding down our time in the Philippines.  Rhythm was off all of the prior meds until we arrived in the US.  We were extremely concerned about making the long trip from Manila to the United States.  We didn't know how Rhythm would react being on an airplane, or what we would do if a real emergency arose.  We'd be on pins and needles the whole trip.  But we knew we'd have Haleigh's Hope waiting for us.

During the time leading up to our trip, Rhythm was generally cranky a lot and we had a hard time making her smile.  She was still having 10-20 seizure clusters a day, sometimes really bad ones. The pictures below are some of the best we could get.

The flights to the US thankfully came and went without an emergency.  We arrived in Los Angeles and then made our way to Las Vegas, where we would pick up our bottle of Haleigh's Hope from our friend.  On January 5th, 2017, we gave Rhythm her first dose of Haleigh's Hope cannabis oil.

AFTER HALEIGH'S HOPE

The seizures persisted as we made our way by car and train from Las Vegas to Illinois to visit family.  On January 10th, 2017, however, an entire day passed without a seizure.  Jen and I were stunned.  It was the first day that had happened in a year.  Her mood was starting to vary a lot more as well.  She was very happy on our train ride and as we visited family.  Sadly, on January 11th, 2017, a series of horrible seizures hit three times that day.  We held out hope and persisted with the Haleigh's Hope, but I was getting worried the Haleigh's Hope was not having the desired effect. 

As it turns out, the seizures she had that day were her last.

On January 12th, 2017, we drove 17 hours from Illinois to Virginia.  Rhythm did not have a single seizure.  The next day, none.  The next few days, none.  I didn't want to outwardly say it, but it looked like something special was happening.  Weeks passed, and Rhythm not only had stopped having seizures, but was starting to re-develop with things like rolling over, eye contact and smiles and laughs.

Haleigh's Hope was the only thing we were treating her with.  This, without a doubt, was having a significant effect on Rhythm's Infantile Spasms.  Cannabis Oil was working.  Medical Marijuana was working.  The first treatment we had given her that demonstrated any impact.  But we did have a lingering question.......

IS IT LEGAL?

Let's get to the elephant in the room.  Is this legal?  Haleigh's Hope is derived from cannabis, or the marijuana plant.  Everyone is well aware of the battle in many states for legalizing medical cannabis, and it's truly an uphill battle.  26 out of the 50 states, plus Washington DC currently have some form of legalized medical cannabis.  However, it varies by state, and in some cases, it's only approved for the most catastrophic of illnesses or epilepsies.  So is what we are giving Rhythm actually legal?

Haleigh's Hope is currently available to be shipped to all 50 states.  I talked with Portia Scovern, a representative of The Flowering Hope Foundation (http://www.floweringhope.co), who provides information and support for patients using Haleigh's Hope.

Here are some excerpts from that interview:

What are the factors that allow HH to be available in all 50 states for shipping?

When the cannabis content is below .3% THC, it is then called a Hemp oil. Hemp oil is available in health food stores, Walmart, Walgreens, etc.  The difference being those local products will be from hemp seeds or industrial paste. Industrial hemp is for rope, paper, or clothing. Hemp seeds are great for shampoo, or lotion but not reproducing healthy bloodcells. True cannabis is what is needed to help your endocannabinoid system. Our cannabis is grown and watered by hand, (no automatic machinery) here in Colorado. 

What was the inception of Haleigh's Hope and some success stories?

  

Haleigh’s Hope is a high-CBD strain from Colorado named after a 4-year old with cerebral palsy and epilepsy. Her conditions were treated with an oil derived from this strain, which exhibits a CBD:THC ratio of 24:1. This low-THC, high-CBD cannabinoid profile was finally achieved after four years of crossing and selecting from hundreds of different phenotypes.  www.floweringhope.co has a long list of testimonies. We can also be seen on Vice-Weediquette, National Geographic, Fox, CNN, MSNBC, and YouTube.

What are the best contacts for people with questions or inquiries or who are scared to give this a try?

Floweringhopefoundation@gmail.com, Flowering Hope Foundation or Haleigh's Hope on facebook, 719-368-7963

Do you have any personal testimonies or messages you or any Flowering Hope team member would like to give.

I am a pain and anxiety patient. I can certainly understand the torment of social anxiety and panic attacks. I have three bulging disks in my degenerative spine but thanks to Haleigh's Hope I have been pharma free for almost 2 years. I am able to hike Colorado mountains with little to zero pain. HH prevents anxiety and stops the rare panic attacks that break through. 

ONE MONTH ON HALEIGH'S HOPE

Fast forward to one month after starting on Haleigh's Hope cannabis oil, there had been no seizures, and we were always getting pictures like these:

At the beginning of this blog, I stated that Cannabis Oil saved my daughters life.  I meant that in more ways than one.  There's the obvious horrific toll that the pharmaceuticals were taking on her body, destroying her liver and doing damage we probably weren't aware of.  We saw messages all too common of other Infantile Spasms or Epilepsy children in our support groups that had passed away,  occasionally due to reactions to the medication.  The other ways are seen above.  Happy.  Smiling.  Active.  Laughing.  It's no life to always be sedated and sad. We started to get our daughter back.

If you are interested in trying Haleigh's Hope, visit their website at https://haleighshope.com/

NEXT BLOG TOPIC: ASSESSING THE DAMAGE

The Philippine Cannabis Compassion Society

"It was time for a different path...". 

There were a few days that made a significant difference in Rhythm's path.  Already on Rivotril, Valproic Acid and Phenobarbitol, Rhythm contracted a really bad cold in July of 2016.  She had an appointment at the Asian Hospital in Alabang, Philippines and was likely looking at additional medication on top of the witches brew she was already on to now attack her cold.  How much can a little body take?  Pharmaceutical Hell was only getting worse.

Jen was at her wits end.  She desperately wanted to get Rhythm off these medications but was worried about how it would impact Rhythm.  Withdrawing from these drugs is not easy, and an abrupt withdrawal could be damaging.  Jen was with some family members staying at a hotel near the Asian hospital.  While talking to the desk clerk at check in, Rhythm had a very bad seizure.  The desk clerk asked if it was a seizure and Jen confirmed.  The desk clerk then asked Jen if she had heard that medical cannabis had sometimes been used to treat really bad seizures.  Jen hadn't really looked into that, but as with everything that could be a potential new path for Rhythm and her treatment, she would do her research.

Jen also received a message from a friend named Darwin that day, and he mentioned that medical cannabis was definitely a viable option, not knowing that Jen had a conversation with that desk clerk about it.  Jen took this as a sign. The problem was that cannabis in all forms was illegal in the Philippines.  Darwin referred her to a group that was a staunch advocate of medical cannabis legalization called the Philippine Cannabis Compassion Society, also known as PCCS.  Jen instantly joined their Facebook group and was determined to learn everything she could about medical cannabis and how it could help with Infantile Spasms and Epilepsy.

I asked one of the founding members of PCCS, Kimmi Del Prado, a few questions about the group and it's mission.

Goals and mission of the group.

The goal of the group is to engage in policy making to help patients get safe access to medical cannabis.

How did it form?

PCCS is formerly known as Moms for Marijuana Philippines. As to how and why, here goes. College years. I’ve never encountered a plant as controversial as marijuana. It is heavily present in pop culture and subculture, from the past up to the present, and yet so popular as well in anti drug campaigns. Surely, there must be something about this plant.

One side of the story tells about the horrors this plant will bring once you allow yourself to fall under its spell. Another tells about how it is used as part of religious ceremonies and traditional practice from the past, as well as the present. Then there’s the conspiracy theory about how one person named Harry Anslinger changed the fate of marijuana. Mind you, that’s not just in the US, that little move rippled all over the world - making marijuana one of the most hated drugs in the war on drugs.

Moving forward. As I transitioned to being a mother, I thought it would be a great idea to come together with fellow moms who are as interested and passionate about cannabis as myself. I came across this group on Facebook called Moms for Marijuana. I wrote them an email asking if there is an existing chapter in the Philippines, fortunately, there was none. After several email exchanges, I was granted the Philippine Moms for Marijuana Facebook page. I became the chapter leader as well as the main admin of the page.

My role as a chapter leader is to change the negative perception of cannabis. The organization believes that lifting the ban on cannabis can literally and figuratively heal the world. It’s cultural, spiritual, industrial - sustainable economy towards a green and thriving future.

Part of my job is to familiarize myself with the current status of the cannabis culture. I looked online for local cannabis communities where I chanced upon the case of a couple looking to find a cure for their daughter’s medical condition.

Their daughter, Moon Jaden, had Dravet Syndrome, a rare form of seizure with high fatality rate. In a forum of stoners and (illegal) growers, there was a couple asking where to buy cannabis for their daughter. I thought it was a serious issue that needs to be addressed urgently.

I got in touch with the couple. I asked them if I could share their story on our Facebook page to let people know that there is also a need for medical cannabis in the country. That was during the time Dr Sanjay Gupta took back what he said about cannabis. He said he was sorry that he didn’t look hard enough and it took one girl to convince him to change his mind.

He followed the story of a young girl named Charlotte Figi, also suffering from Dravet Syndrome. Her parents had apprehensions when they learned about cannabis. Coming from military families, choosing cannabis was a crucial point in their life. It was a make or break decision. They found a cannabis strain that brought almost instant result, Charlotte’s seizure dramatically decreased - disappeared even.

The couple’s daughter, Moon Jaden, was then comatose in the hospital. I started putting up campaign posters for her. I didn’t know how to help, what to do. So I started posting updates about her. I put out their contact info, bank account. I wanted people to go directly to them to offer any kind of help they can.

What resulted was the birth of a community of cannabis advocates - mostly mothers, with sons and daughters with the same condition, they were all looking for a cure.

During that time, the mother organization was going through internal issues that I had to cut ties and start all over again with a new organization. It wasn’t a good timing to be out in media with the mother organization facing problems. That became the transition of Moms for Marijuana Philippines to Philippine Cannabis Compassion Society.

Volunteers started sending messages. People wanted to get involved in the advocacy. People started coming together with one goal = To give people safe access to medical cannabis. It was a sad state that we have lives on hold waiting to use cannabis. We found ourselves talking to lawmakers, asking them to help us find ways to get cannabis.

We met Congressman Rodito Albano of Isabella who set up a meeting with PCCS, he wanted to know what we need to do to have it available in the Philippines. After several meetings, we were able to file a bill in congress, unfortunately, it didn’t get past second reading. We had to refile it under the new administration and luckily, with the collective efforts, we now have Bill HB180.

As to how I met Jen. PCCS is more of a family than an advocacy group. We take care of each other. We put strong emphasis on family values, hence, when someone hears of a story of a child or an adult patient who could benefit from cannabis, they would refer them to us. We have a group chat, we have regular meetings, fellowship.

While waiting to have access to cannabis, these mothers, family members gained new shoulders to cry on. Everyone treated each other like family, because finally they can talk to someone who was going through the same daily struggles and frustrations.

Having a sick child is one of the worst thing a parent could experience. Jen was referred to me by a Facebook friend. And the rest as they say is history…

Social media outreaches and how that has connected you to supporters.

Facebook plays a very important role. Without it, we wouldn’t have gone this far. Facebook is where we started, and Facebook is where we continue to fight for safe access.

The status of HB180 and how PCCS has helped influence that.

HB180 will have its Technical Working Group meeting on Thursday, May 11. It has gone through the first stage, which is the committee hearing, the resolution was to create a Technical Working Group to  help refine the bill to make it applicable to the Philippine setting. PCCS was heavily involved in the conception and drafting of the bill. We are fortunate that we are given the voice to speak in behalf of all of those wanting safe access to cannabis.

Jen began to slowly wean Rhythm off of Rivotril, Valproic Acid and Phenobarbitol.  In it's place were more natural options like Frankincense and specially formulated dietary options like Reliv.  Something to bide her time until she could go to the United States, where there were many options to try medical cannabis and was only a short time away from happening.  Not surprisingly, Rhythm's mood brightened as she began to shake off the haze that those medications left her in.  More smiles, more activity and a little more life.  But those damn seizures remained.

Finding PCCS gave Jen hope that there were options beyond the pharmaceutical drugs with the horrific side effects.  She became an advocate herself, fighting not only for Rhythm to be able to have access to medical cannabis to treat her seizures, but for all people in the Philippines who need it to have unfettered access to it.  She was on a mission.

NEXT BLOG TOPIC: A NEW HOPE