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
An excellent organization that provides information and support to families and care givers of children with a variety of chromosome issues.
Great information source for the chromosome deletion community!
Parents of a child with a rare chromosome disorder, and the kids themselves: You're not alone. And there's lots of information and knowledge that didn't used to exist, and that's continuing to mushroom. That's CDO's message and mission. CDO uses the power of the Web to connect people who would otherwise be isolated and in the dark. As a parent, it's enormously helpful to know our daughter's condition may be rare, but she's not alone, and that medical and parental knowledge and help out there. It's like stumbling around in a dark room, and finally, you've got light.
Chromosome Disorder Outreach is invaluable for families of children with Chromosome abnormalities. My son has a rare chromosome deletion (less than 20 in the world) and it was hard to find information or families that had similar issues to us. Chromosome Disorder Outreach passed on the names of 4 families that had a similar deletion. I was able to connect with them and discuss similarities and differences in our children. It is a lonely place when your child is unique, but Chromosome Disorder Outreach has made it seem a lot less lonely!
When my son was diagnosed with a rare disorder in 2009 I felt so much less alone when I connected with the Chromosome Disorder Outreach. I found some other families whose children had the same affliction and we were able to form a Facebook support group. Thanks CDO for all the great work you do!
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.
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.