Life with Rhombencephalosynapsis: Rooms of Jade

Thursday, June 3, 2010

Rooms of Jade

The old forum is up and running. It has a new name and a new url. You will need to create a new account but all of the old posts are there!

Hope to be able to get chatting and sharing information again!

1 comment:

AnonymousDecember 15, 2012 at 11:55 AM
hi my name is amy and my 2 year old daughter paige has just been diagnosed 2 days ago with this condition i really do not have a clue all i knw is that she suffers alot an seems to have alot of other proplems as well she has an arachnoid cyst pushing on the cerabellum she falls all the time doesnt sleep well or eat an as also started with seizures i live in england .x
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About Abby

Abby was born with a rare malformation of her cerebellum known as rhombencephalosynapsis. This means that her cerebellum is completely fused at the midline.

She also has structural malformations in her frontal lobe, partial agenesis of the corpus callosum, enlarged 3rd and 4th ventricles, hydrocephalus and a mild chiari malformation.

Very little is known about her condition but what we do know is she is pushing past every limit that has ever been placed on her. Life with RS is not easy but Abby makes it look effortless. She is a tale of success and overcoming obstacles. I live in awe of her every single day.