Still Strong

[dropcap class=”kp-dropcap”]I[/dropcap]magine being told by doctors that your child has only days to live. That is something Meagan Holt has been told about her daughter Maddie, twice. Early on in her young life, Maddie was diagnosed with Zellweger syndrome, a rare genetic disorder that causes frequent seizures, vision loss, hearing loss and many other symptoms.

Maddie’s prognosis was not good. According to all of the doctors that Meagan consulted, Maddie’s life would be short and heavily medicated. In 2015, Maddie was put on hospice, sent home, and Meagan was told she would likely die the same day.

But Maddie didn’t die. In fact, Meagan gave her cannabis oil for the first time at home, and something miraculous happened. Maddie went eight days without having a seizure, which was a record for her.

CULTURE covered Meagan and her daughter Maddie’s story in July of 2017. Since then, cannabis treatment has improved Maddie’s quality of life dramatically. CULTURE caught up with Meagan to get an update, and while cannabis will never cure Maddie’s genetic disorder, the treatment has made incredible improvements in the young girl’s life.

“Since last speaking with CULTURE, Maddie has done amazing things.” Meagan said with pride. Since last July, Maddie’s liver became so hard, that she had a massive internal bleed. This was due to her condition, which causes organ failure. Maddie was given a rapid blood transfusion. Because of her condition, and the fact that she is a cannabis patient, Maddie is not eligible for a liver transplant. Instead of a transplant, Maddie had a shunt put into her liver, which allows blood to bypass the liver.”

The surgery to install the shunt took seven-and-a-half hours. Despite the severity of this surgery and her condition, Maddie went through the entire procedure without opioids, and she was able to leave the hospital in five days.

Then, in late 2017, her medical team discovered a massive vascular malformation in her esophagus, which required blood transfusions every six to 10 days. Because of this, and the toll it continued to take on her compromised liver, Maddie was once again placed on hospice.

But true to form, Meagan didn’t give up. She increased Maddie’s CBG dosage, started using raw cannabis juice, and the results were once again astounding. The massive vascular malformation, also known as blebs, went away entirely, and Maddie is once again off hospice.

“Medically, it’s been overwhelming with her.” Meagan said, in an admirably understated and hopeful manner. Maddie is currently weaning off of her last traditional epilepsy medication, down from 26 medications to two including cannabis.

Another upside to Maddie’s cannabis treatment is that it has been changing the hearts and minds of the medical professionals treating her.

“My relationship with her care team is impeccable,” Meagan stated. “A good example of why we have to continue to reach out to the medical community and educate them—I actually became an advisor for Seattle Children’s Hospital and do a lot of policy work with them now. They now have a policy for off-policy use, so I can administer cannabis to Maddie while she’s inpatient, and the hospital isn’t liable.”

All of the doctors who work with Maddie tell Meagan to keep doing what she is doing. While the doctors can’t legally come right out and recommend cannabis use, Meagan knows that they support her. Doctors at Seattle Children’s Hospital often refer parents whose kids are out of other options to Meagan, because they know she can tell them what they cannot regarding cannabis treatment.

“When I started treating Maddie with cannabis, I never expected it to save her life. And I don’t think any parent should start treating their child with cannabis with the intention of it saving their child’s life. The only intention you should have is for them to have a better quality of life than they have right now.”

Meagan has also been hard at work in Olympia. She helped draft Maddie’s Law, Senate Bill 5290 and the companion House Bill 1060, which would have allowed students to be administered medical cannabis by their parents at school. While the bills didn’t pass, Meagan lobbied for it intensely in the last two legislative sessions.

Meagan is disappointed about the outcome, and she wonders why Washington State has fallen behind other medical cannabis states like New Jersey and Michigan, which allow the kids who need medical cannabis to receive it in school.

Meagan has some advice for parents with children who are out of other treatment options, and considering cannabis as an option.

“The most important thing is, no matter what they tell you, don’t ever give up. Until they’re taking their last breath, it’s not over until it’s over,” Meagan said. “When I started treating Maddie with cannabis, I never expected it to save her life. And I don’t think any parent should start treating their child with cannabis with the intention of it saving their child’s life. The only intention you should have is for them to have a better quality of life than they have right now.”

Maddie’s condition is terminal, and cannabis isn’t going to change that. But what cannabis has done, is drastically improve the quality of Maddie’s limited time on Earth and give Maddie and Meagan more precious time together. It’s hard to believe a plant capable of such miracles, is still so controversial.