ONE in 5000 Care Packages

30/05/2025

It was a very bittersweet day today when I delivered our next lot of Care Packages to The Royal Children's Hospital, Melbourne for families of newborns born with Anorectal Malformation. After five years of incredible care and support to kids and their families, these two incredibly wonderful nurses, Suzie & Jess had their final day at the Colorectal & Pelvic Reconstruction Service due to an incomprehensible decision by the RCH executive to close this multidisciplinary service. It’s impossible to comprehend the impact they have had on hundreds of kids and families in their role as Clinical Nurse Consultants (CNCs). We honour and applaud Suzie & Jess for their commitment, dedication and support to all their patients and families. 🙏🧡💙

02/04/2025

We delivered ONE in 5000 Care Packages to the Paediatric Colorectal Team at Monash Children's Hospital today for families of IA/ARM newborns. 🧡💙

20/02/2025

Our first lot of Care Packages delivered to the wonderful staff at the Colorectal & Pelvic Reconstruction Centre at Royal Children’s Hospital, Melbourne, as there are three new babies born with IA/ARM currently at the hospital. 🧡💙

31/01/2025

Please find below link to the Royal Children's Hospital Melbourne - Colorectal and Pelvic Reconstruction Service, which has PDF versions of comprehensive and informative booklets for families of a child born with IA/ARM which includes the following topics: 🧡💙

- Anorectal Malformations
- Neonatal Care
- Adjustment to Diagnosis
- Colostomies and Illeostomies
- Theatre
- Buttock Care
- Manometry Studies
- A**l Dilations

The Royal Children’s Hospital (RCH) acknowledges the traditional owners of the land on which the RCH is situated, the Wurundjeri people of the Kulin Nation, and we pay our respects to their Elders past and present.

31/01/2025

Please find below link which provides important information for families regarding the "Stoma Appliance Scheme" funding that may apply to families of a child born with IA/ARM in Australia. 🧡💙

The Stoma Appliance Scheme provides free stoma appliances and products to people who have a stoma (ostomates). This helps them live their lives normally without added financial stress. Find out how the scheme works, how to access it and how to get a product on the schedule.

31/01/2025

Please find below link which provides important information for families regarding "NDIS" funding that may apply to families of a child born with IA/ARM in Australia. 🧡💙

Conditions that are likely to result in a permanent impairment

31/01/2025

Please find below link which provides important information for families regarding "Carers Payments" that may apply to families of a child born with IA/ARM in Australia. 🧡💙

A payment if you give constant care to someone with disability or a medical condition, or an adult who’s frail aged.

31/01/2025

Welcome to the ONE in 5000 Care Packages page. This was established to support families of newborns who have been diagnosed with Imperforate A**s (IA) / Anorectal Malformation (ARM). The ONE in 5000 Foundation Incorporated is proud to announce that we will be providing "Care Packages" to families who are in the Neonatal Intensive Care Unit - NICU in Australian hospital's.

The items in the "care package" are designed to support families with the initial phase of hospitalisation and to assist with ongoing care for their child when they are discharged. We also include helpful information for the families and for them to know that they are not alone and are now a part of our wonderful "ONE in 5000 family." 🧡💙

We wish to acknowledge that we have based this initiative on the wonderful "Caring ARM's Baskets, by Pull-Thru Network, Inc." who have been doing this for many years for the IA/ARM community in the USA.