Raising the Goddess of Spring: A Guide for Parents Raising Children with Rare Chromosome Disorders

More children than ever before are being diagnosed with rare chromosome disorders and surviving not only to birth but well into adulthood. The most common chromosome disorder is Down syndrome, which occurs in 1 out of 700 babies, however, there are hundreds of others that are individually rare, but collectively common. This book serves as a guide for parents new to the world of rare chromosome disorders.

Raising the Goddess of Spring shares the story of Stephanie and her daughter Maia, who was diagnosed with a rare chromosome disorder in 1995. Stephanie is the founder of Chromosome 22 Central, an international parent support group, as well as being a Registered Social Worker. Contributors Dr. Melissa Carter and Murney Rinholm, are well-established experts in their fields.

Melissa Carter, MD, is a Clinical Geneticist specializing in Developmental Disabilities, working out of the Children's Hospital of Eastern Ontario in Ottawa, Ontario. She is currently an Associate Professor at the University of Ottawa, Department of Pediatrics.

Murney Rinholm has been president of Chromosome 22 Central since 2002. She is a mother to a son with Emanuel syndrome. She has experience as a special education teacher and paralegal specializing in estates and guardianships. She has also served as a past parent & family advocate for the State of North Carolina's Office of Emergency Medical Services.

Together, the authors combine a wealth of experience in parenting, advocacy, mental health, special education, estates and benefits, clinical genetics, and child development.

Dr. Beverly Searle, CEO of the international support group, Unique-the Rare Chromosome Disorder & Gene Disorder Support Group, based in the UK, has written the foreword for the book.

Stephanie’s journey, along with stories from other parents, is woven around explanations of chromosomes, advice on common medical and developmental concerns, as well as covering reproductive issues for carriers of chromosome differences. Raising the Goddess of Spring also discusses relationships, planning for the future, and child loss. You will learn how to manage your mental health and find humour and joy in raising your child. You will also learn how to find your strengths, become a fierce advocate, and build resilience along the way.

This book will be of interest to parents of children who have rare chromosome disorders, as well as physicians, nurses, genetic counsellors, developmental therapists, special education teachers, or anyone who is involved in the care and support of children with rare chromosome disorders.

"In this remarkable book, Stephanie has compiled a wealth of valuable and insightful information for parents affected by the diagnosis of a rare chromosome disorder in their child. She tackles many topics from the perspective of her own experience as the parent of her lovely “goddess of spring,” Maia. Touching on the long-term emotional impact of Maia’s diagnosis, she has helped point the way for others towards understanding and to the identification of often needed support resources for immediate and long-term issues. This is a book that acts as a guide to assist parents and families today and for their future. I am honored to partner in research with Stephanie and this extraordinary group of children and adults."
-Dr. Beverly Emanuel, Professor of Pediatrics
University of Pennsylvania School of Medicine
The Children's Hospital of Philadelphia, Division of Human Genetics

From the Foreword:

“Stephanie has not shirked from tackling some of the most sensitive and intimate subjects and thoughts that families often encounter. From the moment of diagnosis through the different stages and events of their changed forever lives and beyond.”
-Dr. Beverly Searle, CEO
UNIQUE, The Rare Chromosome and Gene Disorder Support Group, UK