Rare and Resilient - ONE in 5000 Anthology

by Greg Ryan

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

334 pages, Paperback

Published December 15, 2020

Reviews

[Tyler Gray · Rating 5 out of 5]

I was born with imperforate anus (IA) AKA no butt hole. Like one in 5000 people around the world. Yes, it's real. There is no cure as it causes other life long issues, even after surgery. I have always been and always will be incontinent. I used to do enemas/malone, currently have a colostomy (again, had one as a baby). I also have other issues related to VACteRL Association (used to be called VAteR Syndrome) as many of us born with IA/ARM do (but not all. And ARM stands for anorectal malformation). It's not laziness. It's an invisible disability that causes pain, trauma, medical procedures, doctor visits, surgeries etc. Each person with IA can have a different story. Some have more issues, some have less. What works for one person, might not work for the next.

It also causes a lot of shame. And growing up when I did, the internet barely existed and as a teen I had internet but it was dial up and certainly not like it is now. Now we have facebook groups and ways to talk to others in the same boat, which is amazing, but I and many others didn't have that growing up (and some still don't depending on where they live/their situation) so we literally felt completely alone, like no one understood, because it's so rare. I'm in my 30s and to my knowledge , i've never met anyone else with vacterl or IA/ARM. Though it is an invisible disability, so who knows, I might have.

The shame and stigma need to end, but it's going to be hard getting there as these issues are so taboo. There needs to be more awareness and understanding. Something Greg Ryan and the one in 5000 foundation are working towards.

It is so wonderful, on one hand, to read these stories, to see myself in so much of them, to know there are others out there who understand, going through the same things. Feeling all alone is the absolute worst. But on the other, it's a double edged sword, as I would NEVER wish these issues on anyone. No, not even my worst enemy. After that though I must mention there is also plenty of hope in these pages. Also plenty of emotion and it is heart-wrenching.

I'm beginning to see just how strong I am. But ... can I please get a break?