Thursday, 15 February 2007
First CHARGE diagnosis in Tasmania
We had another appointment with the geneticist today and told us today that while looking up unrelated information back in his office he found that Raphael was now the first case of CHARGE syndrome diagnosed in Tasmania
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4 comments:
Hi,
My name is Nicole, I am the mother of a beautiful little girl that was diagnosed with Charge nearly 3 years ago. Her name is Hayley, we are in Newcastle, NSW. Hayley has every aspect of Charge from profoundly deaf, major heart defects(have been repaired), Choanal atresia, respiratory, coloboma among other things like asthma, low muscle tone.
How I come to be writing to you is that your blog was found by a member of the chargelistserver from Canada.
Do you know of the Australiasian charge association here in Australia? I have provided there web address just in case you haven't. They are wonderful people and very supportive. www.austcharge.com.au.
Look forward to learning more about your presious little one.
Nicole
hi im ellen another charger 1 from aus to im in sydney nsw feel free to email me at ellen.howe@gmail.com if you have any stuff to talk bout wow first in tas i have never heard of it down there im trying to think of ur closest rep my guesswould b rob last i will fwd him the email that we got on the charge list that i have and see what he thinks but i think hes your closet hugs ellen in sydney
i forgot to tell u ive got hearing colobomas tummy probs and much more
Thanks Nicole, I have already had the fortune of contact with the Australian association and the ListServ that you mention.
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