This is a personal page by parents of children with a rare degenerative disease. The page might be useful if you are studying the psychosocial effects of chronic illness, or self-help and support by families of those with chronic illness. The URL for the Bennett Boys'page is: http://www.caringbridge.org/ca/bennettboys/
Although you have to read their jounal to find them, Alica and John Bennett supply both their first and last names as well as a mailing address. If you are interested in the struggles of families in dealing with chronic disease, The Bennett Children's Journal is a personal site you can safely use in your research.