I have a daughter, 3 months short of being 13 with swcah. 
It was a shock and we were scared when we first heard about cah.   

But,

we have a beautiful daughter.  She is perfect in every other way.   She is smart, she is beautiful, she is fun to be with, she is funny, she has many many friends, she plays sports, she is in band, and she is just like everyother girl you will ever see.  She is the joy of my life.   She takes her medications and she craves salt and salty foods.  I keep all endo appointments - faithfully.   We do the best we can for our daughter and she is perfect in our eyes. 

Someday it will all be routine, it will be a part of your life, not a bad part, just a part of her life. 

Karen