These eight moms have risked it all to save their kids with medical cannabis. Their stories may be difficult to hear, but their determination and willingness to keep fighting for effective pediatric medicine are beyond admirable. These moms have risen up to confront politicians, spoken on national news about their treatment decisions, and have bravely shared their stories for others to learn from.
In December of 2013, Paula Joana and her family faced one of the darkest days of their lives. Their 15-month-old daughter, Sabina Rose Joana, passed away. She died while awaiting access to medical cannabis in New Jersey.
Sabina was diagnosed with Dravet syndrome when she was six months old. Dravet is a rare and severe form of childhood epilepsy. It’s often unresponsive to medication. Sabina’s final seizure lasted over 24 hours and damaged her brain to the point of no return. The Joana’s had been planning a move to Colorado, where they could access the herb. But, Sabina did not have that much time.
I would sit in prison my entire life if she were still here and on cannabis. I would sit in there gladly. But it was too late. – Joana told WNYC
Suffering pain that no mother should ever experience, Joana turned to activism as an outlet. It became necessary to confront Governor Chris Christie (R) directly. New Jersey has had medical cannabis legislation since before Christie took office, but the governor had refused to budge on compassionate access to medical cannabis for children. Medical patients have to work through a significant amount of red tape.
Due to the holdup, sick children like Sabina were unable to access the potentially life-saving medicines they needed. In 2014, Joana got her wish. At a town hall meeting, this small town mom stood up to the governor in a big way:
You made a speech about [stating that] you won’t expand the medical marijuana program. The very hour you did that I took my baby off a ventilator. – Joana
Meiko Perez and her son Joey have become leaders in the fight for medical marijuana for autism. Before giving her son edible marijuana brownies, Joey was unable to eat and dropped to a mere 46 pounds.
You could see the bones in his chest. My son was going to die. – Perez told Good Morning America
Within weeks after starting medical cannabis treatment, he became significantly less hostile, began to make sounds for the first time, and gained a whopping 38 pounds. Perez credits cannabis with saving her son’s life. While Perez is able to access medical cannabis for autism in California, most states don’t list autism as a qualifying condition. Inspired by her son’s remarkable improvement with the herb, Meiko began her own organization.
The Unconventional Foundation For Autism (UF4A) began in 2009 and has helped educate families all around the world. She receives hundreds of emails from supporters and parents of autistic children. In an interview, Meiko explains:
I have families from South America, United Kingdom, Australia. We all resonate with the same story. We want to provide a better quality of life for our children.
Perez also sits on the board of directors for NORML Women’s Alliance. But, Perez’s cannabis activism didn’t begin early in her life. It wasn’t until she saw the herb’s remarkable effect on her son that she became a dedicated convert.
I actually come from a law enforcement/religious family. And I’m in the legal industry. So this [choosing cannabis] was completely out of my character.
Medical marijuana for autism is indeed an unconventional treatment. But, since Perez has come out with her story, more and more parents are pushing state legislators to include autism as a qualifying condition for medical cannabis.
This March, we lost another child to Dravet syndrome. Cyndimae was thirteen years old when she passed away, but her mother Susan Meehan will not stop fighting for medical marijuana. Meehan had worked tirelessly to find access to medical marijuana in her home state of Connecticut, though she eventually had to move to Maine with Cyndimae in order to obtain the medical marijuana that so greatly improved Cyndimae’s quality of life. She was having four to five “big” seizures a day, with anywhere between 80 to 100 smaller seizures. Cannabis put these smaller seizures to rest.
The move to Maine I’ll never regret. I gave up so much to get here. Our house in Connecticut is in foreclosure, I gave up a job that I loved, and I spent 24/7 with this girl, with my daughter, and I’ll never regret that decision. It was the best two and a half years of her life.
A video of medical cannabis calming Cyndimae in the midst of seizure quickly spread around the internet, earning over 1.5 million views in seven days. Cyndimae’s story was followed by news reporters over her fight for medical cannabis.
So many people across the world know her smile, and are learning the value of cannabis as a medicine. – Susan
Meehan’s openness about her daughter’s struggles provided proof to the world that medical marijuana works, and it works well. So well that the state of Maine has adopted legislation inspired by Cyndimae’s story.
Angela Brown broke the law to save her son’s life. Unlike many other children featured in this article, Brown’s son Trey wasn’t born with a debilitating medical condition. He developed extreme pain, swelling, seizures and muscle spasms after a severe baseball injury to the head in 2011. Trey dealt with this debilitating pain for nearly three years.
He’s the shell of himself. He’s in so much pain, and that causes depression. – Brown told CBS
They had tried 18 different medications, but nothing helped. Desperate for something to take the pain away, Brown purchased cannabis oil from Colorado. The herb is illegal in their home state of Minnesota.
It’s a miracle in a bottle. – Brown
The oil allowed Trey to go back to school, the pain stopped, and so did the muscle spasms. But, relief was only temporary. After finding out that Trey was taking a marijuana extract, school officials contacted the police and Trey’s medication was taken away. Brown then found herself facing two years of jail time and a $6000 fine. Minnesota had approved medical marijuana earlier that year, but the law was not effective until 2015.
By April of 2015, Brown and her attorney struck a deal with the state which dropped the charges against her. Since that time, the Brown family has decided to move to Colorado. The experience has made Brown a medical cannabis activist. She continues to fight for the right to access the herb.
Charlotte Figi quickly became the face of pediatric medical cannabis when her mother, Paige Figi, took her daughter’s story to the national press. Back in 2013, Figi and her daughter Charlotte were featured in Dr. Sanjay Gupta’s CNN special, Weed. Charlotte has Dravet syndrome. Children with Dravet often have seizures that last 20 to 30 minutes or longer, and they don’t stop on their own. Charlotte was having a seizure every 15 minutes.
I said my goodbyes to her as I’m doing CPR on her or in the hospital, I kind of prepared myself for the worst. She’s still here, but she’s been through a lot to get to this point.
When doctors told Figi that she was out of medical options, she decided to try cannabis. The Figi family uprooted from their Connecticut home and moved to Colorado. They gave Charlotte a high-CBD strain now named Charlotte’s Web.
Figi’s bravery and willingness to risk everything was the gas needed to fuel the medical marijuana movement. A cannabis supermom, Figi now travels around the United States sharing her daughter’s story. In a 2014 interview with The Gazette, she explained:
I always stayed away from politics. I don’t feel like I’m an activist. I just feel other kids should have this chance.
Following other marijuana migrants, Jennie Stormes left her hometown of Home Township, New Jersey for Colorado to obtain medical marijuana for her son. Her now 17-year-old son, Jackson, is another child with Dravet syndrome. Epilepsy drastically impaired his daily functioning, and he tried over 50 different combinations of prescription medications before turning to cannabis.
In November 2012, he started using cannabinoids and this is the best seizure control he’s ever had. – Stormes tells Lehigh Valley Live.
While some patients are able to access medical marijuana in New Jersey, the Stormes family had no ability to access the kind and forms of marijuana that are used to treat pediatric conditions. She was also limited to two ounces of dried bud a month. That’s only a 10 day supply for Jackson. So, she decided to ship it in from elsewhere. In an interview with WNYC, she explains:
I run the risk of getting arrested every single day because his medicine comes from California.
That risk hasn’t stopped Stormes from coming out and sharing her story with the world. It also hasn’t stopped her from uprooting her life and traveling to a new state, leaving her job, friends, and support networks behind. A super mom and medical cannabis hero, Stormes won’t rest until she can give her son the medication that gives her son’s brain a much-needed rest.
Sarah Ellett has raised her voice in a state deemed one of the most unlikely to see cannabis reform, Utah. Ellett’s daughter, Remie, has been fighting for her life from the moment she was born. Remie spent her first five months on earth in a neonatal intensive care unit, suffering from a multitude of life-threatening medical problems. Now three-years-old, Remie suffers from thyroid, respiratory, and digestive issues. She must be fed through a feeding tube. She was not expected to live. She’s now four-years-old.
When she began to give her daughter medical cannabis, things changed.
I was blown away. Not only did she stop throwing up, she started walking, and she started saying little words, I was just blown away by the things she started to do.
Ellett is a single mother of seven children, and Remie isn’t her only child with a disability. Two of Ellett’s other children also have medical issues, as well has herself. Earlier this year, she told reporters that she feels she and four of her other children could benefit from medical cannabis as well.
As if caring for seven children wasn’t stressful enough, Ellett also has to contend with marijuana’s illegality in her state. Back in January, social workers visited Ellett’s home after learning that she had been treating her daughter with cannabis oil. She procures medical cannabis from out-of-state sources, but this is a difficult process.
Now, she is considering moving to another state until medical marijuana laws in Utah loosen. In a state with an extremely conservative reputation about drugs, Ellett has gone above and beyond to get the word out about the power of medical cannabis.
Quincy is 14-years-old. He has Dravet syndrome. Like many other Dravet patients, Quincy ran out of effective pharmaceutical options. He tried over 30 different medications to no avail.
We think one of the drugs caused brain damage at the age of two. He used to walk and talk, climb the slide by himself, and put puzzles together by himself. And within four doses of the drug, he quit talking and walking.
LaFrance decided to try cannabis. Quincy is not seizure free, but LaFrance says that cannabis has provided the best benefits with the least amount of side effects. He’s more interactive and his eye contact has improved significantly. Quincy currently uses two different kinds of cannabis oil to treat his illness.
In an incredibly touching video, LaFrance attempts to directly engage President Obama. She states:
I have a question for President Obama. Why can’t you just issue an exectivive order rescheduling cannabis? Right now cannabis is scheduled as DEA Schedule 1, which means it has no medicinal value and it has the highest penalties on a federal level if someone is caught with it. So, instead of waiting around for congress which is like the biggest, slowest moving ship, why not just issue an executive order and say ‘Hey, lives are at stake here.’
While LaFrance’s plea may be a long shot, her courage to share her story and ask state and federal legislators to make a change is impressive and sorely needed. It’s access to stories like Quincy’s that inches us closer to effective marijuana reform.
All of the mothers featured in this articles have taken considerable risks to provide their children with medical cannabis. But, that’s not the only risk they’re taking. It takes a lot to come out and talk publically about the challenges that you and your family have faced, and it takes even more, to come out for something that may have legal repercussions.
These women and marijuana moms all over the world deserve a big “thank you” for all that they’ve done. Thank you for everything that you do to ease access to medical cannabis.
Do you know a marijuana mom who deserves recognition? Show them some appreciation on social media or in the comments below.