The Aplastic Anemia & MDS International Foundation, Inc has several great resources for families that have children with bone marrow diseases, such as Shwachman-Diamond Syndrome. Below is a summary of one booklet SDA found helpful for our own families. To order a free copy of this book, please visit the AA& MDS Foundation website.
Talking to a Child with Bone Marrow Disease – This is an excellent book created to be read aloud to a child of any age. It was written to encourage children with bone marrow diseases to ask questions and express their feelings. The illustrations are wonderful and the writing is excellent. It not only addresses having a bone marrow disease, but brings up topics that can help children learn positive coping skills in dealing with their disease. Topics include: What can I do when I am feeling bad?, What if I don’t want to talk? , Why do I get sick?, Why do I have to go to the hospital and Why do I need Medicine. It also touches on such topics as: Why is my family upset? And What do I tell my friends? There is a thoughtful section for children to fill out questions (fill in the blank) such as, I’m sad about____________, I need to speak up when __________________ and I love _______________ . The back part of the book includes a blank journal where the child can write about his or her experiences with bone marrow disease.