Well, it turns out your brain’s cerebellum is super important… A couple of years ago I found out that mine was shrinking. My sister and I both have a rare form of genetic Ataxia called SCAR8, ARCA1, SYNE1 or Ataxia of Beauce depending on who you ask. Either way it’s recessive and I guess I just won the genetic lottery. But instead of getting paid the rest of my life I have to pay, and it’s turning out to be pretty expensive.

After my diagnosis I searched for a way that could help me explain this complicated disease to my young children. It soon became apparent that there was nothing simple like I was looking for. What I found was either geared at those with the condition or more complicated than my kids could understand.

I decided if there wasn’t anything out there that would work, I’d have to make my own. What I wanted was a physical book my little girls could hold with illustrations geared towards kids. I’d written and illustrated a book a year before and published it online through Amazon KDP so I figured I’d write a book about it. (It turns out it wasn’t nearly as easy as I thought.)

So I started writing it on my phone whenever I had a few minutes here and there between being a Dad, work and church stuff. It took a few drafts and I rewrote some things to make them simpler or add analogies to better explain things. I also realized there were a lot of uncommon words like accessibility devices or cerebellar ataxia, so I decided to add a glossary of those kind of words at the end with simple definitions.

Since the illustrations were the longest process for my first book I knew I needed help. I decided to use photoshop and Adobe’s A.I. software to speed up the process. I didn’t want my kids to be adults by the time I finished it. A.I. is definitely not perfect and I had to photoshop a lot of the pictures to keep them from looking weird, and although the pictures are still far from perfect, I was able to tweak them into some pretty nice illustrations to accompany my manuscript.

After finishing the completed picture book, I realized this was a helpful guide for all ages and the simple definition of the condition, symptoms and what others could do to help Ataxians like me really helped. Above all, I wanted to make it available to everyone so I decided to keep the price low on Amazon! It’s great for kids, grandkids and anyone that wants to learn a little bit about this neurodegenerative condition.

I’ve loved reading it with my kids and it’s been great seeing them understand more and more. Even my three year old has talked to me about it and I’m able to use the pictures to really help her be more aware of why her dad is different. This is more than just awareness to me, it’s promoting understanding and compassion.