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Story about Congenital Central Hypoventilation Syndrome .

Mom and wife of CCHSers.

Mar 17, 2016

By: Amanda

Congenital Central Hypoventilation Syndrome
Hello there. In 2012, I got married to a man that was diagnosed at Birth with cchs. He also had a daughter that was diagnosed at Birth with cchs. I am both of their primary care person, outside of doctors of course. As of right now, I have 4 good nurses for my daughter. None for my husband. I order supplies,  make nurses schedules, and dr. visits. 

I have known my husband since 2008. Our daughter was born in 2006. (She was born to another woman.) He was born in 1983. I'm not really good at this, so if you have any questions, Facebook or email me. [email protected] 

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