I will soon publish a long chronological order of events about the problems that Raphael (my son) has been faced with since birth up to and beyond when he was diagnosed with CHARGE syndrome.
After then I will publish events as they unfold about the challenges that he faces in his life.
The entries in the blog are likely to be a mixture of factual summaries and long winded stories.
I hope that this blog will be used for four things
- To help me remember all of the components of his medical problems and how they interact with his development.
- To communicate with friends and family about what is going on with my boy. Of course I don't mind to talk about it, but this will be a place where the most up-to-date and accurate information will be published.
- To provide a small source of information about what parents of CHARGE syndrome children can do for their CHARGE children in my home city: Hobart, Tasmania, Australia.
- To get it off my chest!
http://www.chargesyndrome.org/
http://www.chargesyndrome.org.nz/
3 comments:
Hi there! I found your blog doing a CHARGE syndrome search. My daughter Kennedy is 9 years old and has CHARGE. I moderate the International ListServ for CHARGE Syndrome (we have about 1000 members). It's great to see more and more families online - we have a site up at www.chargesyndrome.info. I will be anxious to read all about Raphael. Please feel free to contact me at any time, we have a fair number of Aussie families on the listserv and there are some really "CHARGE-knowledgeable" professionals over there as well, two of whom I've had the pleasure to meet at the International CHARGE syndrome conferences.
Take care and wish you all the best from Canada.
thanks for the information Lisa. I am a member of the ListServ as you are probably now aware.
did you mean:
www.chargesyndrome.org
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