Afraid, a Book for Children “at risk” for Huntington’s Disease  
Afraid, a Book for Children “at risk” for Huntington’s Disease explores the fears of a young girl who’s father has Huntington’s Disease, an inherited degenerative brain disease.  As she works through each fear, her mother helps her to understand that it is okay to be afraid of things that she doesn’t have control over, but she doesn’t have to let that fear define her life.  She ultimately learns that knowledge is power, and that power can give hope. 

Written by Michelle Hardt Thompson (gene negative)
Illustrated by Pat Leslie (gene positive)
 

1st and 2nd Editions published by the Huntington’s Disease Society of America Arizona Affiliate

Dutch Translation

French Translation

Italian Translation

German Translation

Korean Translation

Portuguese Translation

Spanish Translation

How this book came to pass...

In 1996, Michelle Thompson’s father was diagnosed with Huntington’s disease, a degenerative brain disease manifesting with symptoms similar to Parkinson’s disease, Alzheimer’s disease, Multiple Sclerosis, and others.  Each child of an affected parent has a 50% chance of inheriting the disease.  Unfortunately, being “at risk” for the disease while watching a parent physically and mentally digress, can lead to a lot of fears:  fears of the unknown, and fears of things that can’t be controlled.  Michelle tried to address some of these fears in the book while bringing hope to the reader.

 

                                                    Reviews:
                      “I was so pleased to receive a copy of “Afraid” by Michelle                                      
                      Hardt Thompson and illustrated by Pat Leslie. There are
                       too few books for children that explain HD in a way that
                       will help them to realize that it is this terrible disease that
                      makes their parent act as they do, not a lack or loss of love.
                      If even one child benefits from reading “Afraid” then
                      Thompson/Leslie will have done a wonderful thing.”
                      Barbara T. Boyle, HDSA National Executive Director/CEO

                      “Afraid is written from the heart by someone who has been
                      there.  It honestly expresses observations seen through the
                      eyes of a child, and the gamut of emotions felt in response.
                      Most importantly, the author then offers suggestions for
                      ways to ease the fear and sadness.   Illustrations are
                      appropriate for the text and drawn with tenderness.  Ages
                      10 -100 would find comfort in these pages.”
                      Andrea Zanko, MS, Division of Medical Genetics UCSF

                      “Afraid is a thoughtful and compelling book, which will be a
                      valuable tool for families dealing with Huntington's Disease.” 
                      Sonja Stevenson, MD, Pediatrician

                      “Afraid is a great book for kids at risk for HD. Even if they don't
                      have HD but their Mom or Dad is at risk, this book still helps a
                      lot! HD is a terrible disease that can kill.  Lots of people don't
                      understand about this disease so they treat these special
                      people differently.  Afraid helps this problem.  I recommend this
                      book for anyone.”    
Mikayla, Age 10, At-Risk, Denver, CO

                       “Many kudos go to Michelle Hardt Thompson for
                        encouraging open communication with our children!
                        Though every HD experience is unique, Michelle's book 
                        helps us realize that dialogue with each other is important
                        for this generation and the next. One way to provide better
                        care for HD families and to quicken research to find a
                        treatment is to talk, educate and share our HD stories.

                        
Happy Sharing!”  Jane S. Paulsen, Ph.D., University  of Iowa
                        Prof. of Psychiatry, Neurology, Psychology and
Neurosciences

 

 

 

                              Copyright © Michelle Thompson 2011