The Heyman family is committed to raising the awareness of fragile X syndrome. Scott Heyman was diagnosed with fragile X syndrome at the age of four, so the family had to learn as much as they could about the disorder. Fragile X syndrome is the leading cause of inherited mental retardation. Stephen Warren at Emory University identified the fragile X gene in 1991. The syndrome is caused by a change in the code of a particular gene on the X chromosome. The gene does not produce the protein it normally makes. Messages that must be sent and received for proper brain development and functioning are disrupted when this protein is missing. The syndrome causes any or all of a cluster of autistic-like characteristics like repetitive speech patterns, hand clapping, difficulty with eye contact and learning difficulties.
Gail Heyman is the Director of the Fragile X Association of Georgia. She founded this organization in 1992 with her sister. Her husband, Lyons Heyman, is an active Board Member who participates in the program and activities. In addition, Jared, Scott and Carly Heyman are each involved in the Association by serving as role models and speaking about sibling advocacy.
While demonstrating their love for their brother with special needs in a supportive way, the Heyman family has had a positive impact in their neighborhood, school and community by increasing awareness of fragile X syndrome. Carly, Scott and Jared have been interviewed by the newspapers, television and radio talk shows.
Carly was also inspired by her high school teacher to write about her experiences, hoping this will inspire other families and increase awareness and raise money for research. My extra Special Brother, How to Love, Understand and Celebrate a Sibling with Special Needs is written with complete candor. Carly entertains and teaches the reader about many of her experiences with her brother. She shares honestly her struggles, frustrations and finally her exhilaration as she learns the skills to cope with her brother’s limitations. She hopes that her journey from accepting to rejoicing in her brother’s individuality will be embraced by other siblings of children with special needs to inspire a closer relationship between them.
The book encourages family members to share in the joy and the challenges of having a child with special needs. Proceeds from the sale of this book will benefit children and families with fragile X syndrome through the Fragile X Association of Georgia.
Johnetta B. Cole, Ph. D., President of Bennett College, believes that Carly offers priceless counsel to anyone who has a sibling with special needs and what she shares about life with Scott is powerful advice for creating a positive relationship with any sibling. The Executive Director of the Georgia Special Olympics, Georgia Milton-Sheats, states that the book teaches wonderful life lessons, and that we should accept a person for the individual they are and that we all have challenges to address and overcome.