We found out a month ago that our baby has a rare genetic condition...one that doesn't even have a name! As soon as I found out, I started looking online for some sort of information and came across CDO. Even before I fully registered (which I've now done and gotten access to many other benefits), I read and cried through so many different pages on their site. The cover photo on their website says, "You are not alone," and that was exactly what I needed to hear. I am very thankful for how this organization has helped me just in the past few weeks and I anticipate it being a wonderful resource for us throughout our daughter's life.
CDO has been a place for me and my wife to learn more about our son's condition. We have also found out that we are not alone as we have learned the stories of other families. This website and nonprofit has been a great support community for us.
Great website that help medical geneticists provide information on rare chromosomal disorders to patients.
Three years ago I got a phone call from the geneticist's office. I was told that our daughter Diana has a rare chromosome deletion that is associated with major abnormalities of the body, as well as overall developmental delays. Like many mothers who are confronted with such news, I fell to the floor screaming. I felt so alone. Nobody I knew was in a situation like ours. Additionally, Diana's deletion was not presenting itself in the same way as others who have her deletion, so we had no blueprint for her development.
When I found this group I also found people like me, going through similar experiences. From discussing practical and medical issues (which diapers are best for larger children) to emotional issues (how do we react when people mock our children) we have a place to go. Additionally, with more research and awareness, we hope to improve the lives of our children. We want all the good things for our children that all parents want.
Picture -Diana and her Daddy when he returned from deployment
They are the only US organization that cares about our children's condition. They are a source of info for those of us who must advocate for our children in a medical environment geared to treating "standard" issues with normal children.
When you learn that your child has a chromosome disorder that is shared by only 20 or so other children in the world and this condition is considered "undiagnosed" because the doctors do not know anything about it, you are bewildered. CDO was a godsend because it connected us with parents of similarly affected children. It was in talking with these parents that we were able to manage our child's healthcare. The doctors simply have no experience in dealing with children with "undiagnosed" chromosome disorders. I do not know what we would have done without CDO.
This is an excellent organization for information and connection to other families with rare chromosomal disorders. They were the first real information I found when my son was about 3-years-old and I was lost back then. This organization helped me greatly. He's now 21.
My son, Darius is 24 years, born with chromosome abnormality deletion 13q. Darius is a fun and personable young man. He is vocal but his expressive language is compromised and limited. His receptive language is better. He is a handsome young man with beautiful blue eyes. Darius is graduating from a program called Career and Community Studies at the College of New Jersey, an academic and living independently program for young adults with developmental disabilities. If someone had told me ten years ago, your son will attend college and do well. I would have look at them as if they had two heads. My son has surpass my limited thinking. He has shown me that is very capable of living a productive life with support. Darius is graduating from college this May, and is working three days a week for three hours a day. He loves sports, and his goal is to work for an university sports team. I have been a member of the Chromosome Disorder Outreach since my son was 3 or 4 years old. It's a organization for us to share our story and experience raising our kids with a rare disorder. It has apprised me of resources and medical professionals to help better understand my son's disorder.
Chromosome Disorder Outreach has been a huge support and source of information for me since my son was born 12 years ago with Chromosome 8p Disorder. I am very grateful for this wonderful and much needed organization.
Hello. Twelve years ago, my second son was born with a rare chromosome disorder and CDO helped get me through this very tough and confusing time. I still find solace and helpful information with the group even now. They are an invaluable non-profit that supports and aids families facing these rare illnesses. I highly recommend support for this wonderful, life-changing non-profit group to continue it's great work.
CDO has been so supportive and generous with their assistance and time during very difficult times.
CDO helped me through a very difficult pregnancy in which doctors diagnosed the fetus I was carrying with a rare chromosome anomaly. I was frightened and confused until I received very helpful knowledge and guidance from CDO. My son is alive and thriving today, thanks in large part to CDO walking me through the challenging steps of becoming a parent. Heidi