I found out about it through ivillage. Basically it's a website run by a woman who 25 years ago gave birth to a SNC. She wanted to start a database for parents of SNC to be able to connect with each other.
So in her database there are 4 cases of DOOR syndrome. With only 35 cases diagnosed worldwide, that's pretty good! So I sent $20 to get the names of these families as well as the MUMS newsletter.
The other day I got the names as well as a description of these kids' symptoms. Uh, can we say DEPRESSING?!
Among the highlights- profound mental retardation, nonverbal, deaf, blind, autistic, seizures, wheelchair, global delays.
DOOR syndrome is progressive in nature. It is metabolic so while her condition is fairly mild right now, it will probably get worse as she ages.
I want to contact there families but I am scared that they'll tell me that their DCs were born fairly normal but seriously got worse as they got older. And I don't think I could handle hearing that.
For now, I still have hope to hold onto and I'm not ready for the scary reality that is DOOR syndrome. But at the same time, I am desperate to connect with other moms who have gone through what I am going through and can give me advice.
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