David Kirby, Duchenne’s Biggest Fighter and author of Prism: Shedding Light On Life with Duchenne

My name is David and I have Duchenne muscular dystrophy. Duchenne is a neuromuscular disease characterized by progressive muscle weakness. It is the most common muscular dystrophy in boys, and it follows a similar trajectory in most people: losing the ability to walk around age 10, requiring ventilation in the early 20s, and survival into the late 30s is rare. I grew up in Chicago and went to the University of Illinois (’13, MSW ’17). I was able to live on campus, away from home, and be fully independent, thanks to a specialized residence program at the University. My unique living situation gave me the opportunity to have many typical experiences that others with send not often get to have. Recognition of the uniqueness of my experiences were the catalyst for writing my book. I realized that my situation was a perfect case study to show how much people with Duchenne can accomplish if given the right environment, adequate support, and encouragement. I felt compelled to tell my story, in the hope that it could show exactly what people with Duchenne are capable of. In short, I hope to inspire others with Duchenne, as well as parents of people with Duchenne – it is usually devastating to receive the diagnosis, and seemingly hopeless. They hear my story, perhaps there is some future will not seem so dark. My book is called Prism: Shedding Light on Life with Duchenne. It is a memoir about my experiences with having Duchenne. The first three chapters detail the highs and lows of growing up while learning to adapt to an ever-changing disease. The majority of the book focuses on my time in college: living in the adaptive dorm, learning to be independent, and struggling to accept my limitations. 3: what advice would you give those who possibly want to write a book but are having trouble thinking of ideas or motivating themselves to write. When I started my book, I had no prior writing experience. I did not go to school for writing, and have no background in writing or English. I just dove right in and started it, and basically just learned as I went. So in terms of writing ability, anyone can develop their skills if they work at it. I would also say that any aspiring writers should read as much as they can—especially the genre they plan to write in. The best way to get a feel for the best way to put words in paragraphs together, as well as structure, is to see how the professionals do it 4: Where can people contact you in regards to your books? The best way to contact me currently is through my facebook page Prism a.k.a David’s Book https://www.facebook.com/Prism-aka-Davids-book-313605882386390