Hello,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…Continue
I'm a thirty year old fiction writer residing in Alexandria, Virginia. My current project involves a 15 year old high school student named Kyle who has Duchenne Muscular Dystrophy. He shares the main character spotlight with Chelsea, a senior in the school Kyle attends.
I need help from the Duchenne community. I've done research into the genetics and medical aspect of Duchenne. But, the most important information only you can supply.
What the day by day struggles are. What doctor's can't tell me because they aren't caretakers. What goals would a 15 year old with Duchenne have? What is his treatment regimen? How do his parents/family care for him? How does he maintain as much independence as possible? How did he come to terms with his diagnosis? Or does he still struggle with the implications?
I have many more questions. But, that is a good starting point. If there is anything you think I may be missing, feel more than free to suggest it.
I would like to interview anybody who is willing to give their time and information. I need to hear all sides: parents, sufferers, caretakers, friends, family, coworkers.
I will not reprint anything told to me or any persons' real names.
I have started to write the story and if you would like to read some sample pages before becoming involved please let me know.
I appreciate all help you can give. Thank you.
About my family:
My mother was born and raised in the MIdwest. My father was born and raised in Norfolk and Virginia Beach where a lot of my family still lives. I have an older sister who lives in Brooklyn, New York and two younger brothers, one who lives in Blacksburg, Virginia; the other in Baltimore, Maryland.
We have always been a close family. So, lots of love and fighting.
My grandmother on my father's side was a painter (that is her picture hanging behind me in my profile photo). I helped care for her during her last days. I love my parents, but I had a very special bond with my grandmother that was on a different level.
My grandfather on my mother's side was a minister. He was the one who actually married my parents.
I come from a very artistic family. My uncle owns a successful art gallery in the Chelsea section of New York City. My grandmother painted, drew, and even made a lamp that I still use in my room. My sister is also a writer, albeit not as talented. One of my younger brother's puts us all to shame. He paints, draws, does computer animations, and is a multi-intstrumental musician. To date he has recorded four full length albums.
I have a large extended family who are also very artistic. They paint, draw, sculpt, make movies, play music. We never bore ourselves at family get togethers.
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We would be willing to share some of our experiences living with Duchenne, however my son is only going to be 11 in August. We live close to DC and would be willing to meet in person. What is the best way to contact you? You can leave us a message on our page.