The story of Daniel
Hi, I’m Daniel. I’m a ten year old boy, I’m a lover of science and reading and I’m a rare disease advocate and book author! I wrote and published and launched my first book last year on Rare Disease Day.
I’m also a Rare Disease Patient in Canada. I’ve been fighting with my condition since I was just 13 months old, and have had many trips, stays and procedures at hospital. My disease has been very scary at times and has threatened my life many times with a rare blood disorder called Macrophage Activation Syndrome. I have a lung disease, systemic arthritis, prolonged ongoing fevers, rash and Crhon’s that are all symptoms of my disease and for the first five years of my life I required a daily painful injection to stay alive. For a number of years I needed biologic treatment and immunoglobulins IV medication in hospital every two weeks including during COVID where I was immunosuppressed and at high risk of infection. Now I take a needle once a week and despite some small flares I am managing my health well.
I wrote my book during the pandemic during my time in hospital and it was my way to use a fantasy story about a little dragon on a journey to discover how he began to breathe fire to share with other kids about what I was going through and hopefully help other rare kids feel less alone too.
The little dragons journey in many ways mirrors my own. My family and I have always recognized rare disease day and used it as an opportunity to teach my teachers, peers and community about my uniqueness and how they can help support rare in their own communities too.