Growing Up with Fragile X Syndrome: The Road to Marty Campbell

Robyn R Iredale

Marty Campbell has a hereditary genetic condition known as Fragile X Syndrome. FX syndrome was first identified in 1969 and is now known to be the most common cause of intellectual disability. In 2009, it was estimated that between 45,284 and 125,337 people in Australia had a full mutation or carried the FX syndrome (pre-mutation). FX is known to be present in most societies, though the prevalence rates vary considerably. The latest statistics for Australia indicate that 1 in 3600 males and 1 in 4000-6000 females are affected and that as many as 1 in 280 males and 1 in 125 females are carriers. Every week in Australia one child is born who is fully affected and 12 children are born who are carriers.

This book, written by his mother, traces the story of Marty’s birth, his early childhood years, going to school and finding work and his gradual evolution into a semi-independent adult. Woven into this story are the experiences of people living or associated with Marty. It provides a flavour of the difficulties faced by Marty and his whole family, as well as the joys and achievements. The book also includes research findings from recent family surveys in Australia/NZ and the US. These findings add significant information on various health, social and economic aspects of FX.

Ultimately, it is a story about how a young man grappled with many of the obstacles in his way and about those who have helped him (or hindered him) along his journey. Marty has done incredibly well but he still has his ups and downs and most days present some sort of challenge to be dealt with. The book will provide families with children with disabilities with optimism and hope for how things can be improved and help to reassure them that they are not alone. It is a must read for professionals, especially those working in the health and education fields, so that they better understand their FX clients.

 

ABOUT THE AUTHOR

Dr Robyn Iredale started her working life as a high school teacher and teacher trainer but, after returning to university to complete Masters and PhD degrees, she became a public servant at the former NSW Ethnic Affairs Commission and the Human Rights and Equal Opportunities Commission. She then became a full-time academic researcher and later teacher in the field of human geography and population studies. She has worked at a number of Universities in Sydney and Wollongong and is currently Adjunct Associate Professor at the Australian Demographic and Social Research Unit at the Australian National University. She has authored many journal articles, commissioned reports and books on migrants and refugees in Australia, Asia, the Pacific and other parts of the world.

Robyn has a family history of fragile X syndrome (transmitted by her mother) that was only discovered when her son, Marty, was seven years old. She is a fragile x carrier and has passed the syndrome on to two of her children. She also has two brothers, one grandson and two nieces who carry the syndrome. Her more than 50-years of experience of FX make her well placed to describe its many-faceted effects and provide information and hope for others.