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!
When my son was diagnosed at age 11, we were told that he was the only known case in the US and 10th in the world. They didn't know much about the disorder and were studying the 6th Chromosome at Children's Hospital of Philadelphia, PA. We were so glad that we got a diagnosis, but we still scared of the unknown. He was hospitilized for a week after being diagnosed and we found out about several medical problems that we wouldn't have known. Things slowly got back to the way they were. I found CDO shrotly after he was diagnosed and was a parent contact for 6q and New Jersey. About a year later, I got a call from a mom who just got a 6q deletion diagnosis for her son and it was the exact same deletion as my son!! I was so happy to finally find someone that got it. I met several moms from NJ and have met them. I also found 3 other moms thru CDO who have boys with the same diagnosis as my son and have chatted with them. I was fortunate to get to meet 2 of them on a 6q mom's respite weekend. Without CDO, I would have no been connected to any of these families. Having children with rare chromosomal disorders is very diffivcult. Many times these kids never recieve a diagnosis and when they do, these disorders are misunderstood. Being a member of this organization gives you a sense of belonging. Offers great support, great resources and an extended family who are there for you. Thanks you CDO for all you do!
Our daughter is diagnosed with a condition in which their are no other known cases exactly like hers in the world. We felt alone for so long, until we discovered the CDO. While we still don't know cases exactly like our daughter's, we feel connected and we don't feel alone because we have this valuable organization. They have been so amazing. Just last week I had a genetics question that I didn't feel comfortable asking our primary doctor until I had more information. I emailed with CDO and had a detailed response from one of the geneticist in less than 24 hours. Talk about AMAZING. Completely eased my fears and gave me confidence going forward with speaking to my daughter' team.
We are so grateful for the CDO's efforts and would highly recommend them to any family we meet with a chromosome disorder. I wish we would have known about them 3 years ago when our daughter was first diagnosed! So thankful to know them now.
We LOVE CDO! Like most, we were given no information to help with our son's duplication & deletion. CDO has allowed me to connect with other families going through similar situations. It's really allowed me to not feel so lonely as a mom to a special needs kiddo. I have friends all over the world because of Chromosome Disorder Outreach. Thank you CDO!
When we first learned of my son's genetic deletion we were given almost no information. Through searching online I stumbled on CDO and they were instrumental in helping me understand what it all means and things to expect, as well as helping me to feel like we weren't alone. CDO is an amazing wealth of information and I am so blessed to be a member!
My son was diagnosed with a rare chromosomal deletion (5q11.2-q13.2) at 13 months of age and we were told there was no other information for us about this deletion. We felt completely alone. Then somehow I found Chromosome Disorder Outreach and became a member and was put in contact with many families who have similar deletions to my son. Through their newsletter I was also informed of a recently published article by a French geneticist outlining the similarities between 4 children who had my son's EXACT deletion. I was able to contact her and have my son's data included in her research of what is now know as 5q12.2 Deletion Syndrome. Without CDO, we would still feel like we were completely alone.
As my grandson has been diagnosed with a deletion CNV I was searching for information in the subject despite being a health care professional. I was so pleased to find a website offering such detailed, yet understandable, information.
I am a grandmother who has a 2 year old grandson diagnosed with chromosome 1 deletion disorder. This organization was very helpful to me and for that, I am truly grateful. Not too many people are familiar with these different disorders, and sometimes it was very hard for me to gather any helpful information. The Chromosome Disorder Outreach, Inc. did help me though. Everyone needs to know they are there for you.
I am so glad to be a part of CDO (Chromosome Disorder Outreach). Our daughter has 2 chromosome disorders that are very rare. We receive all kinds of information at this site and have met other with similar experiences. Thank you CDO!
14 years ago my son was born with an unbalanced translocation. Know one was able to tell me anything about life expectancy, quality of life, etc. The Drs. were stumped as well. Thankfully I came across CDO and they showed me that I wasn't alone. My child may not have the same chromosome disorder as the next member but we all work together to help people out. Awesome organization!!
Our granddaughter was born with a rare chromosomal disorder and we had so little information or support. We joined the CDO to get access to research data, other types of information, and support from other families. CDO has helped our family and we're grateful for their mission and support.
In the begin of our journey when the doctors could not provide us with any answers the Chromosome Disorder Outreach, Inc. provided us with ample information that would far exceed the answers to the questions we had.
As the research and diagnosing techniques advance, doctors are able to find rare genetic conditions to explain a set of symptoms and the questions that remain after the test results come back can be overwhelming. The doctors can't always translate the results into what life will look like in one's everyday life. The ability to connect with others and have access to research documents has been a priceless benefit to our family. When doctors couldn't give us answers, we turned to CDO and thankfully, we were able to get a better grasp on our son's two microdeletions. We can't thank these amazing people enough!
The CDO charity has really helped me to discover other kids with my son's very rare condition. I have also helped others that were diagnosed in utero with having a baby with this condition which gave me a strong sense of helping others.
I came to find out about CDO shortly after my son was diagnosed (in utero) with an 8p deletion. The support I got from the community and the list serv was top notch and really made me feel like I wasn't alone. Although I'm not always able to contribute in as many ways as I like (financially, time wise, spreading the word wise) I know I would not have survived that first couple years without this great group. Most people have no idea what it is like to have a truly unique child. CDO put me into contact with other parents and we were able to get an idea of what might be coming in the future. Each child is different but it helped us better prepare for what we might eventually encounter. This is a superb organization that does amazing work for a group of people that are pretty hidden. Because each disorder is so unique it's hard to achieve any sort of critical mass. CDO does that. Most highly and strongly recommended!
I am the parent of a young child with a rare disorder and CDO has helped me "meet" other parents of children with this disorder to compare symptoms, discuss possible treatments and therapies, and--most importantly--provide a sympathetic and kindhearted listening ear when times get tough. This is an excellent organization and I highly recommend it to anyone dealing with a rare genetic disease.
I have been a member of CDO for 7 years. This organization offers so much when there is so little information out there. After our son's diagnosis we were left with little to no information about his rare duplication 18q12.3. CDO helped to make us realize we were not the only ones out there. This organization is a blessing!