About this blog: Hello! I am here to share my experiences of what it is like to live with a debilitating condition that doesn't stop. Born an orphan, it wouldn't be until 19 years later that I would learn I had a rare genetic condition, known as an orphan disease (go figure); HIBM (Hereditary Inclusion Body Myopathy), that could potentially take my once physically active body to a quadriplegic state. I am one of millions that have an orphan disease, but one of ONE THOUSAND worldwide that have HIBM.
Through old journal excerpts, writing, video journal and design, I'll attempt to give an honest portrayal of my everyday struggles, triumphs and journey. From the funny, the good, the bad, the migration of my weakness, to me as a designer, to finding an organization, ARM, that is trying to CURE it (yes, it can be cured) and the probono work I do with them, to a constantly forming perspective, and to a spirit that only grows despite my deteriorating body. Perhaps someone out there will read this and if so I encourage you to share, share, share this blog. Click here for ABC7 story