Rare and Resilient: ONE in 5000 Anthology (Imperforate Anus/Anorectal Malformation/VACTERL)
Description:
This book describes with raw honesty and deep emotion the journeys that families go on when their child is born with an Imperforate Anus (IA) also known as Anorectal Malformation (ARM). It is a rare congenital condition that affects ONE in 5000 births which is very rarely talked about or known in the wider community. It reveals the many difficulties both emotionally and physically that babies, children and adults living with IA/ARM endure. It is a book filled with love, courage, resilience and hope. It shows the importance of having access to good information and medical staff who are compassionate and knowledgeable and the unnecessary suffering that occurs when that is unavailable.Above all it recognises that the IA/ARM community looks after each other and is playing an increasingly important role in providing sound information and support. The response of the IA/ARM community from all around the world to Greg’s requests for stories for this book, is a powerful example of how the community is working together. This book is a must read for health professionals and teachers who play such a significant role in the lives of each IA/ARM child, adolescent and adult. It will also enlighten extended families, friends and the wider community about this relatively unknown condition. Reading the stories is inspiring and heart wrenching. It is about babies, children and adults who have strong spirits and big hearts. It is also about the power of love as parents battle their way through the often confusing health systems and the relief when unanswered questions are finally resolved. All proceeds of sale of this book after publishing costs go directly to the work of the ONE in 5000 Foundation. It was established in 2017 s a not-for-profit charity organisation to provide assistance and support to anyone affected by the IA/ARM which has an incidence rate of about 1:5000 births in Western communities. (Higher rates in other communities). ONE in 5000 Foundation is a fully registered with the Australian Charities and Not-for-profits Commission. ABN: 18393396753
Best prices to buy, sell, or rent ISBN 9780646831527
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