The first known book on the subject was just published, which includes several of our friends in CHARGE on the cover...they are such cutie pies! =)
Overview
CHARGE syndrome affects approximately 1:10,000 births worldwide, is extremely complex, and has varied medical and physical manifestations. It was first described in 1979, named in 1981, and only as recently as 2004 was a gene for CHARGE found. In addition to a host of other conditions, most individuals have communication-related problems, including breathing, swallowing, hearing and balance, and speech.
Each of the editors is established as an expert on CHARGE syndrome and has received the highest award bestowed by the CHARGE Syndrome Foundation, the Star in CHARGE, and represent four different disciplines: sensory genetics and neurodevelopment, genetic counseling, audiology, and psychology. They have concluded that studies have advanced to the degree that a single source of information is necessary. This, the first known book on the subject, describes the sensory, physical, and behavioral findings in CHARGE, indicates what kinds of studies need to be done to confirm the findings, and describes how these findings affect the function and development of the individual with CHARGE.
Eventually, I'll get around to ordering our copy of the book, but it is nice to know we have a book reference now when we are trying to explain CHARGE to all the specialists we come across.
If you are interested, you can go here to find out more about this book.
Never expected that one day there would be a textbook that I'd really want to read.
Oh, how things change =)
6 comments:
Oh my goodness...the beginning steps! That's amazing and I'm so relieved as I'm sure you are!!
I giggled at your comment on reading a textbook! ha ha you're a good momma.
Who are the babies on the cover? I read lots of Charge blogs but the picture is so small. Good job !
Ours just arrived today - three of Kennedy's pics are in there! So exciting!
Weird. I told a friend last night that I follow/stalk (:) your blog and didn't know how to fully tell her about this. Love that there is now a book for people to understand:) On the same note, I also believe that Moriah is not defined by this and she is who she is. Beautiful & amazing. Plain and simple.
Stephanie
Hi Victoria - I bought the book and have begun reading it and it is SO good! I am so happy that we have such an amazing resource!
Has anyone come across a suitable head protector as the children begin to walk tend to tumble a lot due to the balance issues?
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