Western Australia - Growden Welcome
My name is Sally Growden and I live with my husband Rex in a small wheat belt town called Kondinin, three hours from Perth in Western Australia. We are farmers (I was a nurse a long time ago) and grow different grains. We have four daughters – our third daughter was diagnosed with PXE at 13. She is now 20 and studying at the University of Western Australia. We are in Perth a reasonable amount of time as our daughters study and work there.
I am very keen to have a group where we can support and share experiences with each other, both parents and people with PXE. Our first meeting held July 2009 brought together four lovely ladies who have PXE along with Rex and I as parents of Caitlin with PXE. We have the support of Kristina, Resource Manager, and The Genetic Support Council in WA for a meeting venue, advice, printing, postage costs etc.
I can't imagine what it must have been like to have been diagnosed, or have your child diagnosed, with PXE before Patrick and Sharon started up PXE International. When Caitlin was first diagnosed, we didn't get on the internet for a week and were given some frightening information from text books. So we were very relieved when we did discover the wonderful work that they have been doing and continue to do.
We would love to hear from anyone who is concerned about PXE and would like to join our group.