I am so glad CDO is still going strong. 28 years ago I too had a child with a chromosome disorder (7 Q-) and was thrown into a unfamiliar world. Myself & a handful of other moms in all different states started CDO. We had a newsletter and weekly conversations. Remember no computers back then so we hand wrote and printed a newsletter and gave support to other parents on the same sometimes scary journey. As time went on life got busy & the original moms and myself handed it over to others and like I stated before I could not be more thrilled that it is still here & going very strong AND much bigger.
My daughter was born in 1989 our first born -Tylermarie – was diagnosed at 3 months of age after being hospitalized for failure to thrive. Me & my husband went to a geneticist who didn’t give us much info but told us to take her home & love her and that’s what we have done for almost 29 years. Tylermarie had open heart surgery at 3, and after that really started to thrive. She has no health issues and is as happy as could be! It was not always like this. Tyler is non verbal so her younger years were very frustrating for her and for me. I threw myself into support groups & CDO. Through all the ups and many downs my girl has taught me far more than what we have taught her. Today Tyler attends a dayhab & loves to watch Barney. This journey certainly is not what we expected but I wouldn’t change it!
Christine Barr -1 of the founders of CDO (a very,very long time ago…LOL)
CDO gratefully acknowledges the hard work Christine and the other founders did years ago creating this organization which has since gone on to help thousands of individuals and families find support for the rarest of disorders. You are not the only one out there!