The foreword of our book is written by Karen Gaffney. Karen Gaffney is a 29 year old woman with Down syndrome. Karen recently (Oct. '07) swam across Lake Tahoe in just 6 hours!
The introduction is being written by Lawrence Leichtman, MD. Dr. Leichtman is a Board Certified Pediatrician and Clinical Geneticist. He travels around the US and gives lectures and also has clinics where he sees patients with Down syndrome.
The book is going to be a comprehensive book covering all subjects, from the basics of Down syndrome (Genetics of Trisomy 21, History, etc), to medical topics, such as information on the heart and the various heart defects which can happen, and other medical concerns in DS, to the subject of Targeted Nutritional Intervention (TNI). We will have a section on diets and information on nutritious foods. A chapter on Breastfeeding will be in the book, because it is a very important topic and extremely beneficial for babies with Down syndrome, in particular. Another chapter in the book will be on the subject of speech, with multiple articles written by speech therapist, Sara Rosenfeld-Johnson from TalkTools. We will also have a chapter on Neurodevelopmental Programs with articles written by Kay Ness, Cyndi Ringoen & Linda Kane, all who are Neurodevelopmentalists. We also plan to include a section on Early Intervention and will hopefully have an article written by physical therapist, Pat Winders.
We are also planning to include a section on adoption. For this section, we will be including mainly stories about families who have adopted a child or children with Down syndrome. We will also include information on how parents can go about adopting a child.
The last, but certainly not least, chapter in the book will be stories from (or about) individuals with Down syndrome who have either accomplished a great feat or just about an adult/older child and how they live their life. The first submission to this section is a story, written by Brenda Scott (Chrisopher's mother) about Christopher Scott. Christopher Scott is the young man who recently starred in the movie, "My Brother." The title of this section is going to be "Life Stories."
In several chapters of our book we are including stories from mothers, fathers, siblings, grandparents, a relative or a friend about Down syndrome. The stories are either about the diagnosis of DS (either prenatally or after birth), TNI and how it has affected the child, heart surgery and how the child's surgery went, breastfeeding and what worked to help the child nurse or what had to be done.
We are also, of course, including pictures of individuals with DS throughout the book and on the cover of the book.
The above gives a general idea of what is in our book and what the focus of the book is.
If anyone would like to contribute their stories to our book, or if you would like to share pictures to include in the book or on the cover, it would be very appreciated. To do so, please contact us.
If anyone feels they have information that would be helpful to the book and would be a good addition in the book (even if we haven't mentioned it above), please contact us and let us know and we will consider adding it to our book.
We are hoping to have our book completed by Spring of 2008. At this point, we plan to publish the book through a self-publishing company called LuLu (lulu.com). Through LuLu they have a distributing program which we will use to distribute our book to Borders, Barnes & Nobles, Amazon, etc. Once our book is completed we will also make flyers about the book to give to hospitals and such to get the word spread. We are hoping to give our book to doctors and other professionals as well.
Feel free to email with any questions!