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In 1999, we sought medical answers as to why Nathan, was not meeting typical childhood development milestones such as making eye contact, rolling over and scooting on his belly. Thinking perhaps he might be blind or hearing impaired we convinced Nathan’s primary care doctor (who thought nothing was wrong and said Nathan was simply developing slower than normal) to provide a referral to a pediatric eye specialist. The specialist upon reviewing the results of an MRI of Nathan’s brain revealed to us that our 8 month old son had a rare birth defect named hypoplasia (thin) of the corpus callosum.
However, the specialist did not have much information to share with us regarding the diagnoses, except that Nathan would most likely not develop typically and mental retardation was a possibility. Stunned by this report, we went home to share what we had learned and began our search to discover more about the disorder. We learned the corpus (latin meaning structure) callosum (bridge) is a thick band of 200-250 million nerve fibers, which sits in the middle of the brain connecting the two cerebral hemispheres. This connection facilitates the communication of information between the right and left sides of the brain and when it is missing or impaired can cause significant developmental and cognitive problems. A disorder of the corpus callosum (DCC) is not degenerative, but it also doesn't improve, so the brain must continually work on developing new pathways to transfer information. Once thought to be a rare condition, DCC has been turning up with increasing frequency ever since the widespread clinical use of MRI to examine the living brain. The confusion surrounding misdiagnosis can be agony for parents and potentially cruel to children, as the expectations raised by wrongly prescribed therapies and treatments lead ultimately to frustration and failure. Researchers suggest the incidence rate could be 1 in every 2,000 births.
A few days later after reading many horror DCC stories on the Internet, I stumbled upon a listserv community sponsored by the University of Maine where parents of children with a DCC were sharing their life stories and support. It was through this connection that we learned about a family gathering in Ohio and attended in the summer of 2000, where we met children with various types of callosal disorders
We returned from Ohio with many unanswered questions about DCC and became inspired to organize a conference in which scientists studying the disorder would come and present their general knowledge and research findings. In the summer of 2001 with the help of our family and friends, sponsored the first 3-day conference addressing the issues of living with a disorder of the corpus at the Yorba Linda Community Center. The response was incredible! It was from the support of families and professionals at this confernece that we were able to form the NODCC a 501c3 in 2003.
Nathan didn't roll over until he was 10 months; didn’t crawl until 2; and didn't walk until he was 3 years old. He started running at age 7 ½ and doing little jumps. At 13 years old he is non-verbal with a few sounds and has 50 basic signs. He also uses a IPad & ITouch to commuicate – but he understands everything said to him including subtle inferences and looks.
“Nathan is the most wonderful child with an incredible spirit. He is clever in his own right and has a quirky sense of humor. He is always smiling, and captures everyone's heart. Nathan’s extended family and friends know about his condition and have always been very supportive, and as he grew older and it became more obvious that he was not a “typical” child, we have always openly discussed his condition in his presence. As a matter of fact, he points to himself when there is any discussion about the NODCC, in which his family is very involved. He knows the NODCC is about him and he absolutely loves attending the annual conferences.
The major difficulties we are experiencing as he grows older is his inability to stay concentrated on any one task for any short length of time, and the fact that he can't speak to convey what is in his mind and in his heart. But that doesn't mean he won't some day. That's the most interesting part about this disorder, every child’s development is unique, but for the most part they seem to progress further than what the specialists originally predicted. Life with Nathan is a heartwarming experience, there are times of sadness and disappointment, but the joy and laughter he brings far exceeds any heartache–we are so very grateful he came to our family-he has absolutely changed all our lives for the better!”
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18032-C LEMON DR PMB STE 363
18032 C Lemon Dr YORBA LINDA, CA 92886
The NODCC is the only national organization serving people with a disorder of the corpus callosum (DCC) and their families.
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