22q Blog Posts
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The 22q Coalition
April 8, 2015
There’s a secret language in this world. You won’t find it in any course catalog, and rightly so, as it requires no instructor to become proficient. You speak it with your eyes and your smiles, and there are a select few that can understand it. Those few are parents. ...
Never Is The Only Too Late
February 21, 2015
[Originally posted on The Story of Audrey Blog]When someone we know and love is struggling, going through a hard time or in the midst of turmoil, most of us want to do whatever we possibly can to help.We’ve all been there at one point or another. That feeling of helplessness when a person or...
Community of Immunity
January 23, 2015
I recently read a spectacular book called, On Immunity: An Inoculation, by Eula Biss, that has stayed with me, in bits and pieces and, honestly, in entire passages. You should read it. Today. The book is incredible. And short. At the very least, just read this blog and pass my recommendation along...
22q11.2 and A Magic Wand
December 3, 2014
I've decided to put a magic wand on my list for Santa this year. One that I could wave when I needed a bit of pixie dust, courage or faith that it would all turn out ok. One that I could keep handy in my pocket, as it seems I have been needing one an awful lot lately. I wouldn't use the wand for...
A Family Copes with 22Q
November 24, 2014
My name is Amanda Ripsam, I am 30 years old. I was born and raised in Toronto, Ontario, Canada. I now live in Michigan. I have 22q11.2 Deletion Syndrome, sometimes called DiGeorge Syndrome. Something that’s very unique about my family is that there are five of us who have DiGeorge:...
Raising Special -A 22q Mom Blog Post
November 11, 2014
As I come to the end of my day, sipping on my last cup of java to push through the last few hours, I catch myself thinking "Where did the day go?". How come I feel like I didn't get anything done? My "to do" list is ever growing. Call this specialist, follow up on that lab, work with my...
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