When my grandson was born, we felt very alone. CDO has helped us know that others care, that others have been able to deal with what at first feels like unbearable news, and has given us the support to find our way. Such a gift!
When you're expecting your first grandchild, you never think about having problems. You only await with eagerness that first time you get to hold your son's child, to kiss those cheeks. When my daughter-in-law birthed my first grandson, he landed us with surprise after surprise that we definitely weren't ready for. From his cleft palate and lip, to his need to be whisked away to the ICU, to his months and months in the hospital, all the things that we thought NEVER would happen to our family happened.
We felt alone, confused, sad, terrified, and more... how could this be happening to us? CDO was there for us. There was information beyond what the doctors even knew. There were other parents who were a step or two ahead of us with advice and experience. There were explanations of some of the basic terms doctors were throwing around. There was a community of people who understood what we were going through.
No one could change the reality, nor would we now wish it to be other than it was, as this little boy is the joy of our lives. But we went from frightening aloneness to being held in a community of those who understood. I don't know what we would have done pre-internet, or pre-CDO.
Such a great organization. They were able to pair us with another family with a child with similar diagnosis. That connection has been invaluable.
CDO helped us find other families with children that had the same disorder as ours. When there are only 19 children in the world that have been diagnosed with the same disorder, that is a blessing. Keep up the good work.
We were at a total loss of direction when my grandson was recently diagnosed with 2 rather rare conditions. I found information, direction, and comfort in the advice and medical research information I received from them. Knowing I was not alone in this has made all of the difference in the world to my sanity!
My 2 week old son was diagnosed with a chromosome disorder a week ago. I didn't know where to go or what to do. I am so thankful I found CDO. They responded quickly and offered us invaluable connections to other families going through the same thing. This life preserver saved me from an otherwise very overwhelming and isolating experience.
My three kids and I were diagnosed with a rare chromosome disorder and chromosome disorder outreach helped us get through a difficult time.
My son and I were not diagnosed with a micro duplication on 16p13.11 until he was 32. Until that time he had faced many physical, emotional and mental challenges but we never knew why. This site made us feel we were no longer alone. I am learning a great deal about how to assist my son and hope that some of our experiences will also help others. I am so grateful to now have support we both need.
When your child is diagnosed with a chromosomal abnormality, you feel completely confused and scared. This website allows you to connect with others who are experiencing what you are as well as find valuable information. It feels so great to know you are not alone.
My daughter is 1 of 22 in the world with her diagnosis, Tetrasomy 8p Mosaicism. I had no idea where to turn or who to talk to for support. Then I heard about The Chromosome Disorder Outreach and my expectations went up! The CDO gave me valuable resources to contact and those relationships I have now I owe entirely to the CDO's caring dedication to helping families living with rare disorders. I am always looking for ways to give back, but I know I will never be able to repay what the CDO has given my daughter and my family!