Back in November, Fox News 13 of Memphis, TN reported on a 3-year-old child that had exhausted her options in search of a treatment for her debilitating seizures. That is, except for one medicine that her family couldn’t get access to due to state and federal laws that block access to the medicine.
By age 3 Chloe had suffered from more than 75,000 seizures, affecting the development of muscles, coordination, and cognition. Suffering from around 100 seizures per day, doctors tried everything in the book to heal young Chloe, including multiple surgeries at Le Bonheur Children’s Hospital and 20 different types of medication. In November her family reported that she was taking 5 medications 3 times a day including medications like Methadone. One of the medications forced Chloe’s parents to sign a waiver due to a severe risk of blindness as a side effect.
Back in January Chloe’s grandmother, Gail Grauer, went in front of state legislators to ask for access to the non-psychoactive form of cannabis oil. Legislators soon passed a bill allowing clinical research from Vanderbilt University in conjunction with Tennessee Tech to grow and distribute the medicine to sick children in need. However, Federal regulations blocked this course of action putting Chloe and her family in a life-threatening bind.
In November, Chloe’s mother, Elizabeth Peden said, “You want to do anything, you would do anything, you would literally do anything to save the life of your child.” Her father Shea added, “One day we will be able to try it and we will be able to get those smiles and those little laughs that a lot of people to take for granted.” Tragically, that day never came for Chloe.
On December 10, Fox News Memphis reported that Chloe Grauer died waiting for the treatment she so desperately needed. Sadly, many parents around the country could be facing this life-threatening scenario with their hands tied by the Federal government. In the United States alone, around 3 million individuals suffer from epilepsy.
At the Federal level traction is picking up, but children who are dying for a cure can’t wait for the slow and politicized legislative process to creep along. In July, Pennsylvania Representative Scott Perry introduced a bill that would allow legalize the non-psychoactive CBD oil at the national level. The bill, H.R.5226 – Charlotte’s Web Medical Hemp Act of 2014 has just begun to gain traction in Congress and will likely be subject to a vote in early 2015. So far there are a total of 38 cosponsors on the bill.
If you would like to take action you can find your district’s Representative here. Write your Congressional leaders and urge them to jump on board with the bill before another child’s life is shamelessly lost due to an inhumane and undignified Federal law.
via: Fox News 13
As the final days of November wind down, we wanted to make note of this month as National Epilepsy Awareness Month in the United States. Epilepsy affects around 3 million people in the United States alone, with around 65 million suffering from epilepsy worldwide. Every year, around 200,000 individuals are diagnosed with epilepsy. That’s more than multiple sclerosis, cerebral palsy, muscular dystrophy and Parkinson’s combined.
In recognition of this month, we’ve put together some of the top headlines from this month in epilepsy. From mothers in Chile uniting for access to CBD oil to farmers in Oregon donating precious medicine to sick children, efforts to treat epilepsy with CBD are rapidly expanding. Here’s what this month brought in epilepsy awareness:
Three moms in Florida got together in an effort to advocate for the right and option to utilize cannabis in the care of their critically ill children. The moms were traveling out of state to get the medicine that they need for their sick children and were heavily involved in the effort to legalize medical marijuana in Florida. Though Amendment 2 did not not pass in Florida, the CannaMoms still have access to the life saving CBD oil and will push even harder for medical marijuana in 2016.
Clinical Testing For Cannabis Oil
Three different cities in the United States will soon begin testing cannabis oil in the treatment of Dravet Syndrome, a rare form of epilepsy. Texas Children’s hospital will be among the first to test the cannabis compound Epidiolex. The drug is a purified CBD oil with no psychoactive effects and will be tested on children between 4 and 10 years old who are afflicted by Dravet’s Syndrome. Georgia and Illinois will be hosting future studies.
A worldwide movement? Perhaps. Similar to the CannaMoms of Florida, this group of Chilean Mother’s just put together a group of over 100 moms in order to exchange information about the use of CBD oil in the treatment of epilepsy. Though cultivation of cannabis remains illegal in Chile, these mothers found this treatment to be exponentially more effective than others at 1/8th of the cost.
An Oregon-based grow-op called TJ’s Organic Garden is treating Oregon children free of charge. Pictured above is 8-year-old Forrest Smelser who is one of the organization’s patients. Forrest was suffering from epileptic seizures up to every 15 minutes before he began using the CBD oil. After receiving the cannabis-based CBD pills, Forrest has now gone over 9 weeks without a seizure. TJ’s owner Jim Murphy vows to give out the medicine for free and has enough to supply around 500 patients.
As epilepsy awareness month draws to an end, let’s take time to celebrate the victories in the treatment of epilepsy and remember that there are millions still suffering. More research is on the way, and you can do your part by spreading this valuable information or donating to The Epilepsy Foundation here.
Photo Credit: Enduring Epilepsy
Over 100 desperate Chilean mothers started a support group called Mama Cultiva, or Mama Grows, to share information about medical marijuana in the treatment of epileptic children. The group of mothers host covert meetings to learn about the cultivation of marijuana as well as the extraction of the CBD known to treat epileptic conditions.
Though consumption of this life-saving medicine is permitted, the cultivation still remains highly illegal and carries up to a 15 year prison sentence. This hasn’t stopped this small group of Chilean mothers from taking actions to save their kids.
Paulina Bobadilla is just one of the many mothers who fights daily with the reality of severe epileptic conditions. Paulina told the Associated Press that her child was in such severe pain that she would tear out her own fingernails.
Another mother, Gabriela Reyes, is an active member of the group with a seven-month-old who was experiencing up to 300 seizures per day. After Gabriela began treating her infant with the extracted cannabis oil (with a few drops on the pacifier) the number of seizures dropped to just 12 per day.
The members of the group can undoubtedly relate in their sense of despair, and justly pay no attention to Chile’s cannabis laws. There are currently 15,000 children in Chile that could benefit from the still illegal cannabis oil.
In September, Chile’s government began planting 750 medical marijuana plants for use in medical research. Mama Cultiva was not permitted into the program due to their focus on children, a verdict that is somewhat counterintuitive.
Still, there remains hope for Chileans as the government tiptoes in to marijuana research and unwavering parents stand up for their ailing children.
Eugene based TJ’s Organic Garden is offering up free medicinal marijuana to children suffering from epilepsy. TJ’s owner Jim Murphy says that they are aiming to supply about 500 children with the non-psychoactive medicine at absolutely no cost. Murphy said, “To be part of the fix is pretty special. It’s a payment within itself.”
The look on Jim Murphy’s face says it all; he’s proud to be helping suffering children. It seems that it’s Murphy’s sense of social responsibility that beckoned his generous donations. “It would be wrong of us not to do so,” Murphy says. With a glimpse of what’s at stake, its no wonder he feels this way.
“Now that I’m on this medication, I feel like a normal boy.”
Those are the words of 8 year old Forrest Smelser, one of the children receiving free medicine from TJ’s. On bad days, Forrest would suffer from a seizure up to every 15 minutes. His mother Tanesha says that in the case of seizures lasting more than 15 minutes, Forrest would begin suffering from brain damage.
Shortly after his 8th birthday, Forrest began suffering from epileptic seizures. The seizures were extremely damaging to the life of the rambunctious young boy. After multiple trips to the emergency room, doctors prescribed the anti-seizure drug Trileptal. The drug proved to be ineffective and didn’t provide the quality of life that a child this age deserves. Forrest became angry and violent on the drug, even hitting himself at times.
After a family friend’s suggestion, Forrest’s mother Tanesha began treating her son with non-psychoactive CBD pills. The results were remarkable. Young Forrest has been seizure free for over 9 weeks now. His mother Tanesha says, “I have my son again. He’s not this fog of a child. He’s not this angry child. He’s my child exactly.”
Forrest is one of 195 medical marijuana patients in Oregon under the age of 18. His mother Tanesha says, “I know it sounds scary and unconventional, but it’s working.” That seems to be the resounding message for parents with children afflicted by epilepsy. Children as young as 4 years old have been enrolled in Oregon’s medical marijuana program.
With more and more success cases being reported across the United States, CBD treatments for epilepsy are becoming increasingly common. TJ’s Organic Gardens has received inquiries from as far away as West Virginia. Murphy encourages parents to contact him, saying, “Get a hold of us. If we can help that’s great. If we can’t, we may be able to point you in the right direction.”
If your child is need of help, you can contact Jim Murphy at [email protected]
via Komo News
The CannaMoms and CannaBabes landed back in Florida last night after spending two weeks in San Francisco, California on a mission for medical marijuana education and treatment.
These moms have been forced to seek medical marijuana treatments for their children outside of their home state because the plant is not currently legal in the state of Florida, even for medical use. The CannaMoms, along with many others, are hoping that will change after election day next week when Floridians have the opportunity to Vote Yes on Amendment 2. Amendment 2 will allow medical marijuana dispensaries to cultivate, produce and distribute medical marijuana to patients with qualifying medical conditions. These families just want safe, consistent access to medical marijuana for their children, and they want it to be available in their home state of Florida to avoid having to move or travel just to obtain medication.
The CannaMoms organization consists of a “group of passionate mothers advocating for the right and option to utilize cannabis in the care of their critically ill children.” The three strong moms who started the organization, Jacel Delgadillo, Moriah Barnhart and Renee Petro have children who suffer from severe medical conditions such as brain tumors and different types of epilepsy, and they are frustrated with the horrible side effects caused by the pharmaceutical medications prescribed by physicians to treat their children’s symptoms.
During an interview with 5KPIX San Francisco at the Steep Hill Lab, Renee Petro explains some of the harm caused by pharmaceutical medications given to her son, Brandon, who suffers from epilepsy. She explained that when Brandon is on the pharmaceutical benzo drugs he has bad side effects that make him want to commit suicide. He has asked her several times to kill him, but with the medical marijuana treatment, at night, he asks for a bag of Cheetos instead.
Back in Florida last night, at the Tampa airport, Petro shared the good news about Brandon (pictured below) with WFLA,
“He’s been seizure free for two weeks!”
Brandon has been using a mist spray form of medical marijuana that contains equal amounts of CBD and THC. Petro was filled with feelings of both thanks and anger because there is an injustice that no one realizes, which she explained to WFLA,
“It was very upsetting not knowing what I know now, that something could have possibly spared him the amount of pharmaceuticals he has taken and the horrible side effects. It angers me, why something that is available in other states, that is available and legal, is not legal here [in Florida].”
Moriah Barnhart and her young daughter, Dahlia, who has a brain tumor, were also on the trip to California for medical marijuana education and treatment. Dahlia has also seen success in using cannabis oil treatments while in California. After landing at the Tampa airport in Florida last night, Barnhart told WFLA that they have seen immediate results in Dahlia that include,
“Sleeping through the night, eating and she is no longer being threatened with a feeding tube.”
Floridians against medical marijuana fear that the risks are too high to vote yes on Amendment 2. For the CannaMoms and many others, the only risk associated with Amendment 2 is if it is not approved by voters next week. Not allowing the use of medical marijuana in the state of Florida risks a future filled with a good quality of life for these children and many others who suffer from debilitating medical conditions.
photo credit: steephilllab, Facebook/Cannamoms