Id like to share this in case there are parents here whose child has a rare medical condition: When my daughter was born, there was nothing available to inform what the future might hold, no where to go, no one to turn to. All that existed was a single page in an archaic medical text book about her syndrome describing worst possible case scenario. It was only after 3 years of research that I was led to an appropriate match... I began educating myself on similar medical conditions, things that others would remark upon, i.e. my daughters movements were much like someone diagnosed with Cerebral Palsy. So, I went to that organization and so on to learn strategies how to help her. Finally, someone suggested NORD (National Organization for Rare Disorders). If there is someone else out there with a similar condition/symptoms that you hope to connect with, this organization will likely be able to direct you. It put me in touch with a US-based Organization (Im Canadian) and through this, I learned that approximately a dozen other families from across the globe also registered. We exchanged contact information and began correspondence via regular post (computers were still a few years out of mainstream reach in the early 90s) and today, thanks to internet, we know of hundreds of connections. Another mother (my good friend, Lorrine Packard Peruzzo) and I, in the meantime, formed a Canadian version of the Registry in compliment to its US one hopeful that we could direct those seeking information to one another. Ours is called, Tetrasomy 18p Canada and we have various subheadings of issues for people to read on... i.e. traveling with a child with a disability, feeding issues, heart problems, etc. tetrasomy18p.ca/ *However, most important of all, the issue of seeking similar families is crucial for kinship and increasing awareness so check on NORD who may be able to help! - VM
Posted on: Tue, 22 Jul 2014 20:49:12 +0000
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