My name is Russell Luhring. I'm a fiction writer whose latest story has a main character with Duchenne, a fifteen year old boy named Kyle. I need help from the community to make sure that Kyle's actions and behaviors reflect a fifteen year old with Duchenne. His parents also play an important part in the story, and I would like to hear directly from you your thoughts, fears, hopes, feelings. What does it mean to be a caretaker? What is involved? What happens in an average day? How does one deal with the stress brought about by being a caretaker?
I have a litany of questions. Instead of barraging the readers of this post with them all, I've created a separate document of questions. If you, your spouse, significant other, your child with Duchenne and/or his sibling/s are interested in contributing information, either through answering the questions as a questionnaire or by being interviewed over the phone, please contact me. I prefer the interview route as I can then ask pertinent follow up questions and hear your voice. If you live near the Washington, D.C. metro area it would be even better to arrange a meet to conduct the interview. I have started writing the story and am more than willing to share a sample to those interested.
My goal is to show the whole character. As Duchenne is a very large part of his life, a lot of his behavior, emotions, and feelings are directly influenced, if not entirely formed, by his having Duchenne. As I suspect is also the case for parents.
I will not repeat any names or personal information. Whatever information you supply me with will be taken in confidence.
I appreciate your help, thank you.