CANNABIS CULTURE – Mia Wilkinson was 15 years old when she passed away from complications of Ohtahara syndrome on August 15. Mia’s Mother, Sarah MacNeil, credits cannabis for making Mia’s final years possible.
Their story, of struggle and heroism – now inspires more parents to choose cannabis therapy.
Ohtahara syndrome, also known as early infantile epileptic encephalopathy (EIEE), is a rare genetic condition with a very low life expectancy. Mia would suffer from up to 100 seizures a day. They started when she was only 29 minutes old, with her longest recorded status seizure being over 32 hours long.
According to MacNeil, Mia was not expected to live past her first birthday, and every minute past that felt like stolen time. “It was a constant struggle and she was on a lot of meds, and we had tried different therapies and diets like ketogenic diet and IVIG therapy. We did see some relief with Dilantin, but that put her into acute liver failure.”
MacNeil told Cannabis Culture that the first 7 years were basically spent in and out of ICU. “Sometimes things would work for a while, and then they would stop working, and the seizures would come back with a vengeance.”
Then just before Mia’s 8th birthday, there was a particularly bad episode, and MacNeil turned to her neurologist to see what treatment option they could try next, but the answer she received was devastating. “There was always a new therapy to try, but he said, ‘I’m sorry, there is nothing left for us to try,’ and he was pushing for Palliative. I said, ‘I’m not ready for that discussion yet, so there has to be something else.’”
Despite her protests, the neurologist remained firm that Palliative involvement was the only option left for Mia. Devastated and desperate, MacNeil took Mia home, and shortly after she fell into another status seizure.
“Her rescue meds were intranasal midazolam, which is basically a benzo, and then she would have IM injection of fosphenytoin, but unfortunately that combination sometimes did cause respiratory depression and we would have to resuscitate her. It was just awful.”
On a whim, Macneil asked her ex-husband to roll a joint.
“I just wanted to see what would happen. I was willing to try anything because I knew at the hospital if we went there that they were going to make me talk to Palliative,” she says.
MacNeil lit the joint and smoked it so that Mia could also inhale, and almost immediately the seizures stopped. The rescue medications would often take several minutes to work and require an ambulance to be called, with Mia taking a long time to recover and regain her basic functions, such as swallowing and sucking, but in this instance she bounced back immediately.
Mia found relief from hundreds of seizures a day with cannabis
This drastic result told MacNeil everything she needed to know. “That was it for me. I made a bunch of infused coconut oil. At the time I had no idea what I was doing, but I knew a medical grower. I knew he was organic and trusted him very much, so I just started giving it to her very low doses.”
“Charlotte’s Web had just come out in the States, and it still was only within pediatric epilepsy groups online that you had heard about it, but there was nothing in Canada and there were no physicians that were prescribing. I spoke to other parents in the States. They guided me a bit, and she stopped seizing completely.”
Two weeks later MacNeil told the neurologist about her success, and despite his skepticism, they moved to wean her other medications to see if cannabis really was the precipitating factor of Mia’s dramatic seizure.
With no more seizures occurring, Mia then went on to have the first normal EEG of her entire life, and even began to speak when she had formerly been completely nonverbal. Her neurologist not only agreed to write a medical cannabis prescription for Mia, but also asked MacNeil if she would be willing to go to the media with her story.
MacNeil was not prepared, nor did she want, the influx of media attention that Mia would receive. With prescription availability being inconsistent, and the world now knowing Mia was receiving cannabis oil, there were concerns as MacNeil would supplement with homemade oils when legal means were unavailable.
Having 2 other children at home, the last thing MacNeil needed was to be criminalized for medical treatment that was literally saving her daughter’s life.
Despite the concerns, MacNeil was able to continue to successfully medicate her daughter, and her journey proved to be an inspiration to countless parents worldwide whose children also suffered from daily seizures and other medical concerns. One such parent was Kendra Myhre, who went on to become a close friend of the family.
Myhre’s son Zayden also endured hundreds of seizures a day, with his first seizure at only 28 days old. His condition led to him having sustained regression to the point that he had functionality similar to that of a newborn well into his young life.
“I had been doing some research on cannabis and seizures, because at the time it was very taboo and frowned upon having minors ingest/smoke cannabis even for medical reasons. I was desperate – I just wanted some relief for my baby,” Myhre told Cannabis Culture. “I stumbled upon Sarah, and we began messaging back and forth, me bombarding her with all the questions, and her being so patient to explain everything to me from concentration to the best oil to fuse it with so that it can transfer easiest between the blood/brain barrier, to guiding me with dosing.”
Kendra Myhre credits cannabis with improving her son’s quality of life and medical condition
“I remember the first day I showed up at her house, the first time I officially met Sarah and Mia, and I won’t ever forget Mia screaming at her for some more chocolate milk and then laughing at her once she got it.”
“Mia stole my heart. This little girl who defied all the odds, who was living her best life,” continued Myhre. “I wanted that for Zayden. Sarah and I laughed. We cried. And she sent me home with all the oil I could carry.”
“That night was the first night we ever gave Zayden cannabis oil. That was also the first time Zayden had ever gone 24 hours in his life without a seizure. And within 12 hours of giving the oil , Zayden was able to hold his head up, able to sit back up on his own. All his regression was slowly dropping off.”
“We had a long hard fight with the doctors about the use of it – but they could not argue with the results. They had no grounds to stand on.”
When asked about the impact they have seen from Mia’s story being shared, Myhre said, “They have chipped way on this broken, beaten down path and laid a paved path for other parents and families to find alternatives for their children that work. They found an underestimated army and helped them rise to be powerful and strong. They showed them that this path was okay.”
“I could never imagine, having given every day of your life for the last 15 years caring for someone, like we do Mia and Zayden, to that abruptly ending. No parent should ever need to bury their child.”
“Sarah will always be Mia’s voice and I know she will continue doing great things. Cannabis and children with seizures is where it is today because of Mia and Sarah.”
Myhre concluded, “To anyone who is thinking about alternatives or want to try cannabis for any medical reasons, do it. I know it’s scary. The unknown, the ‘what ifs,’ but don’t forget the ‘what if’ of never trying it – of never giving that opportunity to have an amazing outcome.”
MacNeil finished her interview with encouragement for other medical parents as well. “Cannabis gave me 9 years of incredibly beautiful memories with my child that I wouldn’t have if I didn’t give her cannabis. I would do anything for five more minutes with her. There are parents out there that have the option to give their kids more time, and they need to just do it.”
