Every Least Sparrow

Book Cover, Every Least Sparrow

Jennifer’s mother, a journalist writing about life in their small Midwestern town, embarks on a quest with her daughter, diagnosed with Rubinstein-Taybi syndrome, that takes them from doctor to doctor, hospital to hospital, and state to state. It’s filled with surgeries, therapies, and educational interventions– mitigated by Jennifer’s love of music and her fun, curious… More Every Least Sparrow

Fragile X Fred

Look around you. Every person you meet has been molded by an intertwining of genetic information and personal experience. Fragile X syndrome is a genetic disorder that is not widely understood. This book aims to help people of all ages understand that although individuals with fragile X syndrome do have certain challenges, these challenges do… More Fragile X Fred

Growing Up With OI – A Guide for Families and Caregivers

Each chapter has a specific focus, written by a different expert in the field. After an overview of OI, covers topics such as first aid, making treatment decisions, preparing for surgery, personal care, exercise, education, relationships.

Handbook of Neurodevelopmental and Genetic Disorders in Children – 2nd Edition

This book addresses a broad range of biologically based disorders that affect children’s learning and development. Leading authorities review the genetics of each disorder; its course and outcome; associated developmental, cognitive, and psychosocial challenges; and what clinicians and educators need to know about effective approaches to assessment and intervention. Coverage encompasses more frequently diagnosed learning… More Handbook of Neurodevelopmental and Genetic Disorders in Children – 2nd Edition

Jason’s First Day!

Jason, who has Osteogenesis Imperfecta , goes to school for his first day. Jason’s story provides basic information about OI. The story places the emphasis on his abilities and ways he is similar to his new friends at school, rather than a focus on his disability.

Joe Learns About Fabry Disease

Joe’s story was developed to help explain Fabry disease and its treatment from the perspective of a ten year old. This story allows children to join Joe on his journey through diagnosis and treatment of his disease. For ages 4-10.

Living Well With Mitochondrial Disease – A Handbook for Patients, Parents and Families

This book helps make sense of mitochondrial disease (Mito), an overwhelming and complex group of diagnoses that has grown exponentially in recent years. This guide is the first book about Mito written for patients and their families and helps readers understand how the mitochondria work (they are the powerhouse of the cell, providing energy for… More Living Well With Mitochondrial Disease – A Handbook for Patients, Parents and Families

Michael And Marie: Children With Prader-Willi Syndrome

A story of two children with Prader-Willi Syndrome (Michael, 10, and Marie, 6) moving through the school day. While talking about physical and occupational therapy, eating and social issues, the story highlights that they are like their classmates.

Missing Genetic Pieces: Strategies For Living With VCFS: The Chromosome 22q11 Deletion

Book Cover, Missing Genetic Pieces: Strategies For Living With VCFS: The Chromosome 22q11 Deletion

Sherry Baker-Gomez is the parent of a child with VCFS. Her son, now 25, was finally diagnosed with VCFS at 18 years of age after a long medical history and searching for answers. Sherry, herself, had been so desperate for answers after many years of struggling with her son’s undiagnosed disorder; that she became a… More Missing Genetic Pieces: Strategies For Living With VCFS: The Chromosome 22q11 Deletion

My Brother, MPS and Me

Sometimes the best way to learn about a tough topic is to talk to your brother or sister. Join Greg as he tells us about the genetic condition Mucopolysaccharidosis or MPS and its impact in his brother. For children ages 7-12

Neurogenetic Syndromes: Behavioral Issues and Their Treatment

An essential pediatrics textbook and professional reference, this cutting-edge volume sheds new light on neurogenetic syndromes using a promising clinical perspective: examining behavioral and psychological phenotypes, with a strong focus on the influence of genetics.Clinicians who work with children of all ages will fully explore: behavioral phenotypes of established syndromes, such as Down syndrome, Smith… More Neurogenetic Syndromes: Behavioral Issues and Their Treatment