I'm sure you remember the day when your child was diagnosed and you wished you could connect with others, ask questions and learn about life with a disorder of the corpus callosum. I remember it well. Our son, Nathan, was diagnosed with H-CC at nine months old and with little information available about it, I was pleased to receive an invitation from the "ACC Network" to attend a family gathering in our local area. At the local gathering, we were fortunate to strike up a conversation with a family who informed us of a weekend family gathering that would take place in a few weeks in Ohio.
Going to the Ohio gathering was a huge financial expense for us, but with the support of our families we decided to attend. We flew into a Columbus, OH with a tornado warning, we had no idea what we were walking into. It was well worth the effort to get there because that weekend we were able to talk with families whose children were diagnosed with ACC, P-ACC and H-CC. We listened to parents and siblings share on panel discussions and we met Fran and Kim Peek. It was a life changing to say the least.
Anthony and I were so overwhelmed by the wealth of information that was shared. Each night we drove back to the hotel in complete silence digesting everything we had learned. It was at this gathering we decided the following summer we would have a summer gathering in California so families in our area would be able to connect and learn with one another.
It's hard to believe that 13 years later we have attended 12 conferences and multiple family gatherings.
Today, I am so grateful that Betty Schmidt organized the 1999 gathering of 10-15 families in our local area. It provided us the opportunity to learn about Nathan's disorder from those who are living with similar circumstances, and to know we were not alone on this journey.
In 2010 the NODCC decided the National Disorders of the Corpus Callosum Conferences would be held bi-annually and continue the tradition of rotating them through different regions of the United States. Our first year of diagnosis was full of concern about the unknowns; I realize that my fears were eased by networking and meeting other families and it made all the difference in the world. I believe families gathering together in their local areas provide a wonderful opportunity to create a regional network for mutual support and the sharing of resources, experiences and hope.
I encourage you all to consider hosted a Family Gathering in your town. It's as simple as an afternoon picnic in the park, a pot-luck meal in your home, dinner at a restaurant or a full day event at a local amusement park.
Please contact me if you are interested in hosting a gathering, or for more information on how the NODCC can assist you in this effort.
Barbara Fonseca
[email protected]
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