Staying Strong

For Maddie Holt, trying cannabis as medicine was a matter of life or death. When Madeline, or Maddie as she is known to loved ones, was first diagnosed with Zellweger syndrome, her mother Meagan Holt was distraught. However, Meagan was also determined to fight to improve her daughter’s quality of life.

When the rare congenital disorder started giving Maddie frequent seizures, she had to be medicated all of the time. “She was on 26 pharmaceuticals and would barely wake up, was high out of her mind, didn’t communicate with us, stopped using sign language,” explained Meagan. “So for me, when I found cannabis, it was complete desperation. I remember Googling ‘intractable epilepsy,’ because I just felt there had to be something.”

“So for Maddie we have seen every single symptom improved. It wasn’t until we incorporated more THC that we saw her sign language come back.”

In April 2015, after countless medications and trips to the hospital, Meagan was told that she should take Maddie home and spend as much time as possible with her, as Maddie’s young life would be ending soon. She had created an end-of-life plan with the hospital and was instructed that the best thing she could do was to ensure Maddie was as comfortable as possible.

Refusing to accept her only option was to wait for her daughter to pass on, Meagan continued her research on what could be done to help. She didn’t have any biases against trying cannabis as a treatment, and since the option kept coming up again and again in her research, she decided it was definitely worth a try. “I found these stories about kids who were using it for seizures,” she explained. “I am really resourceful so I looked things up; I learned about CBD resources; I actually got connected with Green Extracts, which donated whole-plant cannabis oil to Maddie, CBD and THC.”

After she was given cannabis oil, Maddie went eight days seizure-free, which was a record for her during the lowest point of her disorder. Since she was only expected to live for one day after leaving the hospital and had been constantly seizing, so living out the extra days in a much healthier state was a huge milestone for Maddie.

Once this discovery was made, nothing could stop Meagan from doing what she knew was necessary to keep her daughter alive. She began soliciting donations for Maddie and making sure she had the medicine her daugher needed to keep improving and stay alive and, for the most part, seizure-free and out of the hospital. Maddie now uses a mix of THC and CBD oil to prevent seizures and as a “rescue” when she does seize, and she also uses cannabis products to alleviate side-effects like the chapped lips and dry skin that come from being bedridden. Once beginning all these treatments, the Holt family began to see a major improvement in Maddie.

“You can watch her get a dose and it’s like switching on a light bulb; she comes to life.”

“So for Maddie we have seen every single symptom improved,” Meagan explained. “It wasn’t until we incorporated more THC that we saw her sign language come back. You can watch her get a dose, and it’s like switching on a light bulb; she comes to life.”

While Maddie’s condition still renders her dependent on round-the clock medical care, not only has she outlived what was initially projected, she is now going to school and communicating with the world around her as much as possible. “She is deaf, blind, completely dependent on a feeding tube, she has kidney stones, bleeding troubles, anemia, and cannabis is helping all of that,” Meagan told CULTURE. Maddie is now being homeschooled two days a week, and she continues to progress forward in so many ways.

Although the journey ahead still holds obstacles, Meagan shared how her family’s experience with cannabis oil has changed their life for good. “I have learned to never give up hope and to always remember to put yourself in someone else’s shoes, because you can never understand what someone is going through until you look at it from their perspective,” she said.