Growing Up With Fragile X Syndrome

This book is both for and about Marty Campbell. Marty has a genetic condition known as Fragile X Syndrome that has been passed down through our family. FX syndrome is the most common cause of intellectual disability and yet it was not identified until 1969. In 2010, it was estimated that between 45,284 and 125,337 people in Australia had a full mutation or carried the FX syndrome (pre-mutation). It is known to be present in most societies though the prevalence rates vary considerably.

The book provides a flavour of some of the difficulties faced by Marty and his whole family, as well as the joys and achievements. It is written by his mother and traces the story of his birth and early childhood years, going to school and finding work and his gradual evolution into a semi-independent adult. Woven into this are the experiences of some of the people living or associated with Marty and research findings from Australia/NZ and US surveys.

Ultimately, it is a story about how a young man grappled with many of the obstacles placed 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. Being the subject of a book is yet another of his great achievements as this was his idea.

It 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.