My Nonprofit Reviews

When my son, Max was diagnosed with a rare chromosome disorder at age 11, I had no idea what to do or where to turn. He was the only one in the entire USA and 10th in the world with his exact deletion. I was frozen in fear and uncertainty. I searched the internet for something, anything to help. I found CDO and was so excited. So many families dealing with different diagnoses, all rare. A year after my son's diagnosis, I received a call from a mom whose son was just diagnosed at age 3 with the same exact diagnosis as my son. CDO has a referral program. Without CDO, I would still be lost!! I wanted to help other families navigate through the special needs journey and started volunteering and then became a board member. This organization is incredible and I am happy to he apart of CDO!
Heidi Lerner

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!

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