When my daughter Madeline was diagnosed with Zellweger Syndrome we became so powerless, slaves to her disease. Waiting and watching for it to take more of her away, knowing our time would be short since most kids with this disease don’t live past their first year of life. It has caused her to be deaf, blind, and completely dependent on a feeding tube; she has adrenal insufficiency, reoccurring kidney stones, osteoporosis, limited mobility, metabolic dysfunction, coagulopathy and in early of 2015 developed seizures.The seizures immediately became life threatening. Several times when she was having seizures I would watch her entire body go from convulsing, to limp, to blue, to grey, to watching her be pumped and worked on. The intercom ringing “Code blue forest a level 4 room 123”.Within 2 months we had tried over 20 pharmaceuticals and not only did nothing seem to help our little girl but she lost what little skills she had and appeared to be close to the end of her life. April 10, 2015 we took our child home for what was supposed to be the last time and this was when we began her cannabis journey.
I am happy to report, our lives are not like this anymore. Now, Maddy breathes through all of her seizures, is off hospice, no longer requires opiates for pain; she continues to wean from many of the harsh pharmaceuticals and is one of the oldest living children with her disease. Most importantly, is able to enjoy the life she has. Cannabis has not only saved Maddie’s life but it is giving her a chance at truly living.
We have began creating educational materials, traveling to local and national events, documenting and sharing our story, testifying in our local legislature, attending hearings, department of health and liquor board rule making meetings, and educating providers in our medical community about the health benefits of cannabis and the importance of individualized care.“Descheduling cannabis is one step but re-educating the medical community is going to take time.”
Becoming a part of this team has allowed us to start sharing, educating, and bringing awareness to the reality that myself, and so many other families are being criminalized for saving their child’s life. These children, despite the obstacles placed before them deserve to be comfortable. Why does the government get to decide which children get to be coherent, happy and playful? Maddie’s life matters, and so do the lives of all the patients continuing to suffer because they cannot access medicine. In sharing our story we hope to inspire others, to properly educate the medical community about cannabis and natural treatment options as first choices, and to those walking similar journeys, know that you are not alone.
To support Project PC or to find out more information on how you can become a part of our team visit: