Rhombencephalosynapsis
My daughter was born with Hydrocephalus and the very RARE condition Rhombencephalosynapsis. A condition so rare that there is barely any information on others that share the disorder. I was contacted a few weeks ago by another monther that has a son that was diagnosed with Rhombencephalosynapsis. Toether we have formed a website and forum for others that may be diagnosed or already have the condition and would like to join a community who shares the same. There is very very little research that has been done on this condition, so together we can learn and research ourselves. Sarah has documented and put together traits and symptoms of a few others she has found through her research. That form can be found on our new website!
If you no someone that has been diagnosed with Rhombencephalosynapsis, your not alone. Visit Rooms Of Jade
3 comments:
We are so lucky to live in a time where we can connect with people through the internet in similar situations. There is great camaraderie in understanding.
That is wonderful! I am sure that many parents will feel a sense of peace when they find your site and realize that they are not alone :)
Thanks so much for creating the RS Forum, Cassandra! It's such an important resource for us as parents to children with RS, as well as to the adults with RS who are also beginning to find the site.
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