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Resource Library

The National Fragile X Foundation has generously provided copies of the following titles to share with our members. All of these items are available for purchase on the Foundation’s website.

Please let us know if you would like to borrow any one of the books listed below.

Children with Fragile X Syndrome: A Parents’ Guide

Jayne Dixon Weber (Ed.)

Fragile X syndrome is believed to be the most common genetic cause of mental retardation, even more common than Down syndrome. It can result in a wide range of developmental delays, learning disabilities, and physical characteristics-which all tend to be more pronounced in boys than in girls.At last, there is a comprehensive book on fragile X syndrome for parents. The first and only book of its kind, Children with Fragile X Syndrome provides a complete, sensitive introduction to fragile X syndrome, an inherited, genetic condition caused by a mutation on the X chromosome. This new guide is written by renowned professionals and experienced parents, who offer an in-depth look at the issues and concerns affecting children and their families. It covers: diagnosis; parental emotions; therapies and medications; development; early intervention; education; daily care; legal rights; and advocacy.

With recent breakthroughs in research and effective treatments, therapies, and educational strategies, the future of children with fragile X syndrome is more promising than ever. Now parents and families have this indispensable guide as a source of up-to-date information, answers to their questions, and support from people who know about the challenges of raising a child with fragile X syndrome.

Fragile X Syndrome: Diagnosis, Treatment, and Research (Johns Hopkins Series in Contemporary Medicine and Public Health)

Randi Jenssen Hagerman MD and Paul J. Hagerman MD PhD (Eds)

Univ. of California, Davis. Text discusses the clinical approach to diagnosing the disorder, supported by the latest research in epidemiology, molecular biology and genetics, and neuropsychology. Also presents data on treatment: genetic counseling, pharmacotherapy, intervention, and gene therapy.

Fragile: Handle with Care Understanding Fragile X Syndrome

Marcia L. Braden

Fragile X Fragile Hope: Finding Joy in Parenting a Child with Special Needs

Elizabeth Griffin

Elizabeth Griffin’s son Zack has fragile X syndrome-the most common known cause of inherited mental impairment-and is among the 20 percent of people with fragile X who have autism. Whether you are a parent of a child with special needs or you struggle with unresolved grief, chronic stress, or depression, “Fragile X, Fragile Hope” shows without a doubt that you can survive, and more than survive, you can find your way back to a joy-filled life.

My eXtra Special Brother: How to Love, Understand, and Celebrate Your Sibling with Special Needs

Carley Heyman

Sixteen-year-old Carly Heyman writes an endearing story of growing up with her big brother Scott, a young man who has a sweet smile, a courageous heart, and fragile X syndrome¿the world¿s leading cause of inherited mental impairment. In her direct and honest voice, Carly reveals the ins and outs, ups and downs of daily life with Scott. She identifies challenges that siblings of a brother or sister with special needs may encounter. She shows how those challenges provide opportunities to love, laugh and learn. Through her words, Carly offers the reader a glance into how she and Scott make their relationship work. The strength of Carly and Scott as individuals, their courage, and their indomitable spirits, prevail in these pages touching hearts while teaching us how to live more fully.

Mi Hermano eXtra Especial

Carley Heyman

Spelling Love with an X: A Mother, A Son, and the Gene That Binds Them

Clare Dunsford

A memoir of raising a child with a genetic disorder

When her son, J.P., was first diagnosed with fragile X syndrome, the most common inherited cause of mental retardation, Clare Dunsford discovered that she and three of her four siblings carried the fragile X premutation and had therefore passed on the full mutation to J.P. and several of his cousins. An English professor by training, Dunsford draws on poetry to explore her new identity as a “mutant” and reflect on her life with J.P., a colorful young man with great verbal dexterity and a lovable cheeky streak. Brimming with warmth, Spelling Love with an X shares the disarming insights of a compassionate scholar on motherhood, literature, and genetic inheritance.

X Stories: The Personal Side of Fragile X Syndrome

Charles W. Luckmann and Paul S. Piper (Eds)

In X Stories: The Personal Side of Fragile X Syndrome, people who have been touched by fragile X tell in their own words how the experience has touched and transformed their lives.

The Oak Leaves (The Oak Leaves Series #1)

Maureen Lang

Two time periods—Regency England and contemporary Chicago—are woven together when Talie Ingram finds an old journal belonging to her great-great-great grandmother, Cosima Escott. Through Cosima’s entries, Talie learns that her family was once considered cursed with feebleminded offspring, the result of a genetic disorder (Fragile-X) that may have been passed down to Talie and her sister. Unwilling to face the implications their discovery might have on her own life, Talie tucks the journal back into secrecy, until she begins to see signs of developmental delay in her son.