One of the perks of the job when it comes to writing about medical cannabis is that I get to interview some pretty inspiring people, like these amazing mothers who’ve moved mountains, state and sometimes even legislature, to get the cannabis based medicine they believe their children need.
For them the extraordinary lengths they’ve gone to are just what any mom would do for their child. But the trails they’ve bravely blazed have changed the lives of many children and families as a result. So let’s celebrate these determined, cannabis warrior mommas, because thanks to them more children can experience the therapeutic benefits of the cannabis plant.
Paige Figi is mother to Charlotte, perhaps the most well known Dravet Syndrome sufferer in the world. Little Charlotte would have up to 300 seizures in a day, was fed through a tube, had severely autistic behaviour and faced a very bleak future. As Colorado residents the Figis could legally access medical cannabis, and through the Stanley Brothers began giving Charlotte CBD oil made from hemp. What appeared to be a near miraculous reduction in her seizures thrilled the family and prompted the brothers to rename the oil ‘Charlotte’s Web.’
Charlotte’s story hit the national and international stage, thanks to Sanjay Gupta’s CNN documentary, Weed. Since then, Paige has also become a public figure with her role as spokesperson for the charity ‘Realm of Caring’ and founder of the advocacy group Coalition for Access Now.
“Paige has changed the face and discussion about CBD and its benefits across America and around the world. She, more than any other person, knows the potential for CBD therapy. As a parent fighting for her child’s life, she researched what was happening in Israel, found a non psychoactive CBD rich plant and then learned how to extract the oil that gave Charlotte her life back,” said Geoff Whaling, Founding Member and Board Treasurer of Coalition for Access Now.
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Irish Vera Twomey is the medical cannabis mom of the moment. Her daughter Ava, like Charlotte, also has Dravet Syndrome and began taking Charlotte’s Web oil just a couple of months ago, when doctors had ran out of treatment options for the six year old.
When Vera saw how the CBD based hemp oil had reduced Ava’s seizures by 90% in just one month, she felt enraged that it couldn’t be prescribed by doctors in Ireland. So she decided to walk to Dublin from her house in Cork to get the attention of the Health Minister Simon Harris. Vera didn’t have to walk very far before Harris asked her to stop and agreed to meet her in person to discuss Vera’s requests.
Fast forward a month, and a bill to legalise the medical use of cannabis for certain conditions passed unanimously in the Irish Parliament, thanks in part to Vera’s testimony and public campaign.
Health Minister Harris has publicly stated that it was down to meeting with Vera and hearing about Ava’s plight, that he ultimately changed his stance and supported the bill.
Another mother who brought about a change in the law is Janie Maedler, mom to Rylie, who’d started getting seizures following surgery to remove a non-malignant tumour in her face. After hearing that medical cannabis could help, her parents were left in a difficult legal situation. They lived in the state of Delaware where medical cannabis was legal, but only to adults.
So mom Janie decided to do everything she could to bring about lasting change that would help not only Rylie, but all the other children in the state of Delaware who needed medical cannabis.
She invited Republican state Sen. Ernie Lopez to their home, asking him to make medical cannabis available to children. In June 2015, Senate Bill 90 — dubbed “Rylie’s Law” — was passed unanimously. The House followed suit and the governor signed the measure into law, allowing minors to legally access medical marijuana.
The next wonder mom is Mieko Hester-Perez from California. Her son Joey is severely autistic and has Duchenne Muscular Dystrophy.
Mieko initially started Joey with a high THC cannabis strain because he was dangerously underweight, but she soon saw how Joey’s autism also began to respond well to cannabis.
“Well now he smiles,” says Mieko. “When you’re a parent of a child with autism, you have very simple goals and one of my goals was just to see my son smile. Joey started interacting with other people. He doesn’t speak, but he has a joking personality, so it was a personality we hadn’t seen before.”
Mieko has become an advisor to other parents for the use of medical cannabis for children with autism, founding the Unconventional Foundation for Autism. She is also board member of the NORML Women’s Alliance and Scientific Advisory Board for Cannabis Science.
Mieko pledges to “leave no family behind” and every single day her mission is to help families improve the quality of life for their loved ones through unconventional treatments.
Another mother of a son with autism has been in the spotlight recently. Israeli Abigail Dar, mom to severely autistic Yuval, was desperate to find something to help his aggressive and self-injurious behaviour, after the antipsychotic medication prescribed by the doctors made his condition worse.
While in Israel medical cannabis is available for certain conditions, until now autism hasn’t been one of them. But Abigail found a psychiatrist who was willing to give Yuval medical cannabis under a special license.
The change in Yuval was dramatic. “It was like magic. My son became a calm person, more concentrated, having a smile on his face, and over a year, he didn’t show any self-injurious behaviour or any outbursts which for me and for him is a miracle.”
But for Abigail going through the back door wasn’t an acceptable way to continue with her son’s treatment, and she began campaigning to get autism recognised as a qualifying condition. Through her work she met Dr Adi Aran, a research scientist who’d been given permission to start a clinical trial looking at cannabis and autism.
Knowing the importance of a successful outcome of this trial, Abigail decided to launch a crowdfunding campaign to ensure enough whole plant strains were also included in the study.
“I know whole plant isn’t attractive to investors,” says Abigail. “You can’t get a FDA approval for a whole plant, you can’t patent it. But this is at the moment what will help our kids.”
When Utah resident Sierra Riddle heard the news that no parent wants to hear – that her 2 year old son Landon had leukemia – she followed her oncology team’s treatment protocol without any questions. And so Landon began chemo which successfully killed the cancer in his body. It’s standard policy to continue with chemotherapy once the cancer has been destroyed, but it was at this stage that mum Sierra noticed that Landon appeared to be getting worse, rather than better.
“On the chemo, Landon suffered a 50% weight loss” says mum Sierra. “He refused to eat for weeks on end. He was in constant and increasing pain, losing the ability to speak or walk. He vomited often, not to mention the emotional stress and losing all his hair.”
In desperation Sierra began to look into medical cannabis and decided to make the life changing decision to relocate to Colorado, where Landon would be able to receive a medical cannabis card.
But combining conventional treatment with medical cannabis would prove a rocky road to follow. The medical team at the hospital where Landon was being cared for threatened Sierra with legal action if she didn’t follow the treatment plan they proposed, which included further chemo. They also called in Child Protection Services.
In the end Sierra gave Landon cannabis oil at home instead of the oral chemotherapy, while he continued to receive occasional chemo at the hospital. Doctors were unaware of her decision, and were shocked to see 13 months later a healthy child, plus a large collection of unused chemotherapy medication boxes. The doctors had previously told Sierra that without continued chemo, Landon would be dead in three months.
Sierra has since set up the Team Landon website to raise awareness about medical cannabis and to raise funds for Landon’s continued treatment.
Do you know any medical cannabis super moms we should hade included? We’d really love to hear about them. Leave a comment below to nominate someone.