Sponsored by the Honda Foundation
The Board of the CHARGE Syndrome Associaton of Australasia is producing a new booklet on CHARGE syndrome. This booklet will replace the existing Australasian CHARGE brochure and manual. It will be A5 in size, perhaps up to 32pp, in full colour and include photographs. It will be in an easy-to-read format with brief description of the syndrome including the C-H-A-R-G-E acronym and the now commonly referred to 4 C's, the minor criteria and other CHARGE related anomalies, the cause of CHARGE, genetic findings, prevalence and testing etc. There will be brief information on early intervention, deafness/hearing loss, deafblind, sensory integration, communication, behaviour, puberty, growth, feeding, education. Dotted throughout the text will be quotes from those who are living with CHARGE syndrome - individuals and the families.
This booklet will not be a manual and the emphasis is on brief information. The booklet will contain an extensive list of resources available in each state of Australia, in New Zealand and online. It will direct those who are interested to learn more about the medical and technical aspects of the syndrome to the US website for their free downloadable manual, the Australasian support group for parent contact, state specific and country specific intervention and support agencies and national bodies for professional support(Australia and NZ only), etc etc.
Would you like to contribute to this book? We are seeking input from individuals with CHARGE syndrome, their families and professionals who can offer some thoughts, advice, strategies or ideas about CHARGE syndrome - any snippets of information that you have learned along the journey which may be of assistance to others who are on a similar journey. If you would like to submit a quote to be used, email: Madelene Rich, and if you have a photo we could use, please send one too.
The basic story takes place between two young friends, one with CHARGE syndrome and one without. They banter and joke in typical playground fashion about their lives and discover surprising similarities and differences that bond them closer in friendship over the course of the story. During the process of their conversation they cover questions and answers about CHARGE syndrome. The main character explains in detail what each letter of the acronym, CHARGE, stands for and how CHARGE syndrome affects his daily life in large and small ways.
There are several opportunities for action between the two with fun exercises like covering one eye with a hand to feel the effect of restricted vision, standing on one leg and trying to maintain balance etc.
The book is filled with pictures of kids with CHARGE and simple diagrams of the organs. Other less common aspects CHARGE are covered in a way that is easy for kids to understand.
The aim is for people who are unfamiliar with CHARGE to stand in CHARGE shoes and feel what CHARGE feels like on a daily basis - and to realise that any person's abilities outweigh their disabilities.