Daniel’s story

_“All I know is that I was 13 months old when I almost died. My first symptom, as my mom’s described it to me, was a hive-like rash. Full-body coverage. Then came the 104-degree fever that wouldn’t go away. And then, finally, macrophage activation syndrome (MAS), meaning my immune cells started running wild in my organs, causing massive collateral damage. It was the MAS that almost killed me.

Later, there were more symptoms, symptoms that are their own whole diseases. Crohn’s disease. Interstitial lung disease. And the arthritis, massive amounts of fiery pain. Put it all together and you have an autoinflammatory condition so rare that the best name they have for it is ‘a factor of unknown significance on the tumour necrosis factor receptor superfamily 18 beta gene.’ I just call it my fireball. I’ve been living with it my whole life.

I remember being four years old and feeling so lonely because of my disease. I didn’t want to go to school, I just wanted to stay home with my dog. In fact, the day my mom brought home our dog is my earliest memory. It was the greatest thing that had ever happened to me.

I used reading as a way to get through the loneliness and the long hospital stays. Eventually I decided I wanted to create something for other kids to read when they were in the hospital. I didn’t want them to ever feel as alone and as differentas I did. And so I wrote ‘The FirstFire Dragon: An Autoinflammatory Adventure.’

The dragon is the hero of the book. He has a fireball inside him that’s causing him so much pain, and he has to figure out how to control it. I filled the book with characters based on the incredible doctors who have helped me find a treatment that works for me. The treatment keeps my symptoms in check, but it doesn’t stop them. If I miss a single dose then all of it, including the MAS, can come right back.

And that would be a big problem because there’s still so much I want to do. I want to write another book. I want to get my second degree in karate. I want to go to school and become a research immunologist. Most of all, I want to live in a big house with a bunch of dogs. Just, so many dogs.”

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