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Canavan's Disease

3 replies

amyazelda · 22/03/2009 19:05

Hi, our DD (10 months) has just been diagnosed with Canavan's Disease. We are devastated by this news and are still reeling at the implications and the fact that she won't live very long. Has anyone out there any experience of this disease? I appreciate that if you've been through it you may well not want to talk about it but it would help us so much to try and come to terms with it and to give us an idea of what our options may be.
Thanks.

OP posts:
TotalChaos · 22/03/2009 19:24

Hello and welcome to the SN board. I am so sorry that you have had bad news about your daughter. I don't know very much about Canavan's Disease, but have had a quick look on the contact a family website, and they suggest contacting a support group called climb:-

www.cafamily.org.uk/medicalinformation/conditions/azlistings/c14_7.html

and climb website is www.climb.org.uk

TotalChaos · 23/03/2009 07:46

bumping this back to the front page.

FioFio · 23/03/2009 07:58

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