To really tell Maddie's story I have to go back to when she was born. Madeline came into this world 12 weeks premature and weighed 2 pounds 3 ounces. Despite being so premature she did very well and lived in the Newborn Intensive Care Unit for the first 3 months of her life. On January 25, 2013 we brought our bundle of joy home. However, our baby bliss would soon diminish as we quickly began realizing something was different about little Maddie.
We received a new diagnosis almost each month and it was recommended we have extensive DNA testing done at Jon Hopkins. Finally 2 days before her first birthday, October 30, 2013 in the front lawn of my apartment I received the call from her biochemical geneticist that she had Zellweger Syndrome. A genetic disease that destroys the white matter of the brain. It is a progressive, terminal illness and most children don't live past a year. There is no cure and all treatment is symptomatic. For Maddie it has caused her to be completely dependent on a feeding tube, adrenal insufficiency, deaf (for her normal voices is like a whisper), blind with light and color perception, very limited mobility, liver dysfunction, osteoporosis, kidney stones, developmental delay, coagulopathy (she frequently needs whole blood and platelet transfusions), neurologic pain, and seizures.
Despite her prognosis I was determined to give her every opportunity to learn and grow. The doctors warned me that even if she did learn some developmental skills she would eventually lose them. But, as a mother, I couldn't give up. So I fought for her.We had weekly speech, physical, visual and occupational therapists coming to our home. By 6 months old she was fitted for her first set of hearing aids and within a couple of weeks she began signing. I was astonished at how smart she was! Now it seems silly but Maddie began propping her elbows, rolling over, sitting with very little support and grasping objects with ease. Her sign vocabulary included; mama, dada, hi, bye, ball, more, hungry, sleepy, milk, eat, mouse and sister. She began learning braille prep skills like scanning, which is a technique early blind children learn. They slide their hand gently over the bumps and you read aloud to them so they correlate the words with the bumps. Just when things really started looking up for Maddie she developed seizures.
January 25, 2015 our entire lives were turned upside down. We went from daily walks to the library to daily 911 calls "My baby isn't breathing, she's been seizing for 20 minutes please help." She quickly was put on anti-epileptic medications and our happy bubbly girl began slipping further away with each new prescription. Each new drug brought more side effects and less of Maddie. Within two months she was reduced to nothing.During the time traditional medicine began destroying her I began to do some of my own research, since we were starting to have talks consisting of things like "We are running out of options. This is probably the normal course of her disease. It might be time to consider hospice." I discovered cannabis oil and must admit I was a little skeptical. But I was out of options. The least it would do is make her more comfortable. We also found out that one of her seizure medications had caused her right kidney to become full of large stones. The more I read the more hopeful I became. Could this really help Maddie? I had only heard of one other baby with the same disease ever even using cannabis oil and that baby was very sick. But once again I HAD to try. So we told the doctors our last wish for Maddie would be to take her home for one night and go for a walk. We lived near the Everett waterfront at the time and the breeze and view were amazing. We also planned to meet with a naturopath and get Madeline's medical cannabis authorization. The next day my husband, Maddie's little sister, Madeline and I moved into the hospital to spend her final days together. I also went to a dispensary and couldn't find what the naturopath recommended which was full extract cannabis oil. So I purchased cbd capsules, $60 for 10, ouch! I was a little tearful leaving the store wondering how in the heck we would ever do this on our own?
The capsules were ok and sometimes helped her to breathe through seizures but she still had them and they still lasted upwards of an hour. In our search to find a naturopath to prescribe our then two year old cannabis I became connected with a woman who wanted to donate full extract cannabis oil to Maddie free of charge. This woman was a seasoned cannabis community member and even through the phone I could feel her love and passion. Not only did she further educate me on cannabis explaining to me what terpenes were, encouraging me to read about the endocannabanoid system, how the entourage effect works, and explained to me dosing.
From the first batch of oil I have not turned back since. Maddie went 8 days completely seizure free. We immediately took off the stone causing seizure medication and she was able to begin her series of many surgeries to decrease her kidney stone burden. Cannabis and our wonderful donor supported us the entire way! Within a couple of months I had seen my baby begin to come back. She began waking up for 30 minutes at a time and was responsive and interactive. In those early months of finding her right dose we had a 9 week stretch of no seizures! It is now one year later and Maddie is now one of the oldest living kids with her disease. She has started vocalizing ma, Is starting to move her arms and legs, has successfully removed several medications and is continuing to wean more, and not having life threatening seizures. The seizures she does have are small and are caused by her going into adrenal crisis when her body is under stress which can be for a number of reasons. But thankfully cannabis is there for her.
Cannabis is more than a medicine for us. It has given us our power back. When she was diagnosed we became so powerless. Slaves, to her disease. Waiting and watching for it to take more of her away. Not anymore. Now, we can comfort her during a seizure, we can give her quick relief from pain or agitation that come with dying. Yes, the sad reality is that while cannabis is making her more comfortable it will not prevent the inevitable which is that Maddie is on borrowed time. Everyday I am forced to live it as if she may not be here tomorrow. I have seen Maddie leave her body. 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 words being through around like "No work of breathing. call a full code." The intercom ringing "Code blue forest a level blank room 123" I have a hard time writing this as it brings back the haunting nightmare of what our life's used to be like. This is not a way anyone should have to live. With the use of cannabis my daughters short time here is filled with giggles, cuddles, playtime, walks, outings to various local spots and the coo of her sweet voice. I know one thing is for certain now. That during those final moments, that up until this point have petrified me to even address, I know that Maddie will be peaceful surrounded by love, supported by cannabis.