Letter: Piper's Journey

It's a Friday night at 10 o'clock and I just got out of bed, unable to sleep due to another episode that disturbs the calmness of an unfamiliar apartment in a new city. The lack of sparkle in her eyes as she enters yet another cluster of spasms tears the peaceful slumber away from my child. Hour after hour, waiting for the next one to come. Counting. Tracking. Watching. There is nothing we can do. They come at all hours of the day. Without warning. Everything is dropped to helplessly watch. Is she still breathing? Does she need emergency medication? When will it stop?

Everyone tells you that having a kid will change your life. I don't think this is what they meant.

For the past two years, my wife and I have watched our first born seize uncontrollably every single day. Piper was born with a rare genetic condition, Aicardi Syndrome, which resulted in the corpus callosum to never develop and an intractable form of epilepsy called Infantile Spasms. Since the age of three months, she has seized every day. This is definitely not what I expected fatherhood to be. But I have learned some truisms in these past two years. I have learned what unconditional love really is. I have learned that an education bought at an elite school of medicine does not lead to supreme knowledge. I have learned that you can only rely on yourself and the wise people around you.

Over the past two years, my wife and I have battled for our daughter. Every stone has been turned. Seventeen doctors, nine anti-epilepsy drugs, one severe diet, six supplements, 50,000+ seizures, 1,300 miles, thousands of friends, one last doctor-prescribed drug that could lead to liver failure. We have learned to live by numbers. Numbers that have altered our perspective on parenthood. Numbers that bring a community together for a controversy.

On Aug. 1, 2013, my wife and daughter moved from Knoxville to the state of Colorado. We have moved away from those thousands of friends to join a new controversial community. A community that has become addicted to marijuana. We have moved to Colorado to take part in a movement of parents of epileptic children who are trying cannabis as a last-ditch effort to heal their children.

Marijuana. The word has carries some weight that will not set easy with many of you. Trust me, it was not an easy decision. I too once believed that medical marijuana was a smokescreen for people to use the drug recreationally. Not too long ago, my mind was changed. I learned of a 5-year-old girl named Charlotte Figi. Charlotte has Dravet Syndrome, another form of intractable epilepsy. Charlotte's parents were in a similar situation as us and were at the end of pharmaceutical treatment. Charlotte's parents then found a group of brothers growing a strain of marijuana with low THC (the only psychoactive compound in the plant) and high CBD (cannabidiol, another compound in the plant). They had nothing to lose. Guess what…it worked. The first dose, Charlotte went a week without a seizure. As a frame of reference, she had 300 the week before.

Hope.

She's not the only one. Now hundreds of parents, including many from Tennessee, are moving their children across the country to get access to the now named Charlotte's Web. There's been some media. Perhaps you've heard. Guess what…it's working for a lot of kids.

To give you an idea of our expectations, we do not think it will work. But, we don't think anything will work at this point. Another truism, skepticism. We have accepted that this is our daughter and she has influenced more lives in two years than I have in my 28. She has a purpose, to teach.

Piper started on Charlotte's Web on October 24th. We give three doses per day in an oil form. For three weeks we have been increasing the dose. It's never easy.

This week, we have had two newspaper articles and two local news channels report on our journey. Through social media, I have read 600+ comments on these reports and come across three dissenters. I don't know what is coming next, but if you are still reading, I ask for you to remove your assumptions, your fears, and the unknown and ask yourself why.

These past three weeks, we have seen bad days, like today, but we have seen some of the best days. Compared to one of the worst days, Valentine's Day 2012: 379 spasms. Three days this week she has had two-three spasms. Can we say it is attributed to cannabis? I'm optimistic, but it's not where I want to be—zero

I don't know where our journey will take us, but I hope that Piper has fulfilled her purpose and taught you to examine the possibility. I don't know that we will ever be able to come back to Tennessee, but you can make the change for families so they don't have to make the decision to leave.

Justin Koozer

Denver, Colo.