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The Parent’s Guide to Down Syndrome Story


In early 2015, Becky Brately, a mom of a young child with Down syndrome, started a petition on urging Barnes and Noble to carry books on Down syndrome. After receiving the diagnosis, the bookstore was her first stop and she was incredibly disappointed that there were no titles for her.  


Come April 2015, a senior editor with Adams Media, an imprint of F+W Media contacted Jen Jacob about a new project they are seeking for authorship. Barnes and Noble had requested additional books for parents of children with Down syndrome and wanted to have books on shelves by early 2016.  The publisher found Jen through online searching and the Down Syndrome Diagnosis Network, primarily after finding Unexpected, an online collection of accounts from parents detailing the time of diagnosis. The publisher was most interested in having a friendly, encouraging guide book for parents of children with Down syndrome.  The completed project should include information for new families paired with real accounts from those in the Down syndrome community from birth through adulthood.  While Jen had much experience in the birth- age two category through her work with thousands with DSDN, she was hesitant to accept the project without a co-author with experience beyond the young years. Jen reached out to author Mardra Sikora to join the project. Mardra accepted and the two got to work.  The tight timeline to have a manuscript completed within 6 weeks was a challenge, but through connections with many in the DSDN and The Road We’ve Shared networks, the book came together and was off for edits by July. We were fortunate to have experts Dr. Jan Rydsfor, Dr. Mary McCord and Mark Leach review our work and many self-advocates contribute their personal stories, as well.


The Parent’s Guide to Down Syndrome: Advice, Information, Inspiration, and Support for Raising Your Child from Diagnosis through Adulthood was released for sale online and in stores January 1, 2016. Within the first week, it became Amazon’s #1 New Release in Pediatrics and rose within the top 10,000 books sold. Reviews from parents and professionals indicate how well-received and deeply needed this new book is for the Ds community. 


”The Parent's Guide to Down Syndrome covers everything from expecting baby through adulthood with up to date real life information. This book is seriously a lifeline for all parents!” Janessa Gross


“When our daughter was born three years ago today and diagnosed at birth with Down syndrome, I knew nothing about the diagnosis. The hospital gave us a book that felt like an a-z guide to everything that could possibly go wrong. I was scared and I craved information but also needed to know our family would be OK. I wish I could go back to that day and read this book instead!!!” Tiffany Stafford


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