Being a part of the NODCC conference in July of 2012 was a life changing experience for us. Please consider supporting this great cause.
Fiona joined our family in July of 2010 and let's just say that things haven't gone as planned. When you have a child, you are filled with the hope of the world. You envision them fullfilling all of the joyous milestones in life. You are also filled with many fears. You fear that you might not be the best parents, you might not be able to provide for them, or the worst fear of all; that there could be health issues with your baby. Only someone who has experienced that moment, when the worst fear comes true, can really understand what occurs when a parent learns that their child is never going to live the life they envisioned. All of your initial hopes die and daily life becomes a struggle. Unfortunately, we were in that very dark place and as we looked for answers, we learned of the NODCC (National Organization for Disorders of the Corpus Callosum). We had great reservations about even going to the NODCC conference- we never imagined ourselves to be the "support group" type. We figured if it was horrible, we could ditch it and check out a new city (San Antonio). Man were we wrong!
The conference was a turning point for us and although emotionally overwhelming, we feel that we are now beginning a long and difficult journey with renewed hope and pride in our daughter. And even though your initial hopes are dead and gone, the new path can be just as beautiful. The NODCC has helped us and many other families come to realize this.
The work that the NODCC does is unlike any other organization. Bringing 500 people together from literally all over the world and having 3 packed days worth of valuable programmimg is not easy, and nobody is getting paid for their work. Disorders of the corpus callosum are relatively rare and the organization works to bring awareness and research findings to medical professionals, educators and families of those with the condition. However, they also focus on family networking, especially at the national conferences. Most doctors and neurologists are in the dark about this disorder, so this conference is extremely important to further the science and foster understanding. We have been extremely frustrated with the lack of answers concerning Fiona and her condition. The NODCC conference made us feel more knowledgeable, hopeful, and empowered. This cannot be underestimated when dealing with family, arguably the most precious gift in life.
We know that we do not want to ever miss the opportunity to participate in another conference! We still keep in contact with a few parents we met there. It's incredibly comforting to have those families in our life. We know that they "just get it"- that they know our many hardships and our great joys, although those may be slow to come. These friendships wouldn't exist without the opportunities provided by the NODCC. We hope that anyone in Fiona's 'group of followers' will consider joining us next time at a conference!
A quick note on our Fiona....she turned two this summer! She struggles the most in motor development and speech. She began hippotherapy recently and she is "in-training" with a Kaye walker. She absolutely loves riding her horse, Pepper! Fiona is a smiley girl and loves to laugh. She is very affectionate and enjoys following her older brother or her friends around. She is interested in the world around her and we believe that she is truly blossoming. We love her so very much.
We hope that you consider giving even a small donation to the NODCC, before November 30. The money that is raised will help the NODCC's wonderful work and continue to support those with DCC and their families.