“When he left us, he stole all the words.”
One of the central dramas in SETTING FREE THE KITES revolves around the illness of Liam Carter, the brother of the novel’s narrator, Robert. Liam suffers from Duchenne Muscular Dystrophy. I first became aware of this terrible disease several years ago when I read a piece in the 2002 edition of Best American Essays by Penny Wolfson, which told, in heartbreaking terms, of her son’s struggle with the illness. I read and reread the essay many times, and then sought out the book from which it was extracted. I found more books on the subject and read them, too.
The disease is devastating. It is slow and degenerative, and there is no cure. Not many patients make it to their twentieth birthday. As I read, I kept wondering how families survive as they watch loved ones deteriorate toward an inevitable early death. When a topic refuses to leave you alone, that’s a pretty good clue that you should probably write about it, and so I did.
Several months ago, before the book was even published, I tried to read an excerpt of the novel that talked about Liam’s Duchenne to an audience in Barnes & Noble. It was almost unbearably difficult to do. Even now, I still find myself tongue-tied with grief at the thought of the damage caused by this terrible disease.
Liam, bless him, is still stealing all the words.
And so I’d like to ask you a favor.
On November 5, I’ll be running the New York Marathon as part of “Run for our Sons,” an on-going charitable fundraising drive created by Parent Project Muscular Dystrophy to raise money for research to find a cure for this terrible disease. My goal is to raise $3,000. If Liam’s story in KITES touched you, then I would be eternally grateful if you felt able to contribute to this effort in any way at all. Literally every dollar helps. You can go to my fundraising page here to make a donation. And, just because, I will send a signed hardcover copy of the book to anyone who gives $250.00 or more.
Thanks so much for your consideration.
All the very best –