To raise funds to support individuals and families impacted by Disorders of the Corpus Callosum.
Our story began one year ago today. It was Sept. 8, 2010.
One of those moments you never forget, like the day you got married or gave birth. Only this particular moment, while life-changing, didn't bring us joy.
That's when a doctor handed us an MRI report detailing multiple congenital abnormalities in our perfectly, perfect 3-month old son's brain. It was full of words I couldn't pronounce, let alone understand at the time, including complete agenesis of the Corpus Callosum. I was heartbroken.
Feelings of grief,hopelessness and helplessness washed over me that night. For the first time in a week since my little James had been hospitalized with what we just thought was pneumonia, I left the hospital.
I just couldn't imagine that he could be missing part of his brain (the so-called information super-highway that allows the two sides of the brain to send messages back and forth), and no one suspected anything. Why, why, why? By the next morning, I realized it didn't matter why.
What mattered was that my darling son was still my son. Everything had changed. Yet, nothing had changed.
Once back at the hospital, we met with the neurologist who walked us through everything. It all felt very daunting. Not
only would James come home with a feeding tube due to swallowing problems, he would need all kinds of therapy(speech, physical and occupational) and would need to see all kinds of specialists (neurologist, endocrinologist, ophthalmologist,cardiologist, geneticist).
One of the first things I did was Google corpus callosum. That lead me to the National Organization for Disorders of the Corpus
Callosum. I can't tell you how good it feels to find other families out there who are experiencing the same thing you are. The NODCC has allowed us to access information on our son's condition, and feel some sort of connection to people
we've never even met, but hope to someday. It's been very helpful to me as a mom navigating unknown territory with this condition. Our family is learning more about the brain every day as it relates to James' development and doing everything we can to help him reach his potential. James is 15 months old now
and physically healthy. He laughs and babbles and moves around a lot.
We hope to see him develop even more in the years to come, and that's where your support of the NODCC comes in. Thanks for giving whatever you can, so that James and many others out there can benefit from the research and support provided by the NODCC.