Lucie Villeneuve
fundraiser
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"Go fast!" Jacques loves outdoor fun: boating, kayaking, hiking, biking, swimming, snowshoeing, x-c skiing, & sledding.

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"C'est si bon!" We're lucky he eats all the healthy food we give him, but once he ate only the venison among the veggies

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I went to story time on Friday.

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Two little monkeys jumping on the bed.

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Pepere, we saw bears!

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I want a baby, please.

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"Too loud!" at the 4X4 Pull at the Fryeburg Fair.

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"Mommy, I want to play in the sandbox!"

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Jacques cruising around the house. He's not standing or walking independently, yet, but he's crawling more.

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He loves being up and walking around, exploring what toddlers do.

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Jacques discovers fun things at a toy store. He also likes museums, Storyland, and farms.

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I want to walk!

Please consider a donation to the National Organization for Disorders of the Corpus Callosum in honor of our little explorer. Thank you.

The Story of Our Happy Jacques

Our handsome little man, Jacques, was diagnosed with a rare brain disorder called Complete Agenesis of the Corpus
Callosum (ACC) after an MRI done at age 14 months. After being told the diagnosis and then driving 2-1/2 hours home from the Children’s Hospital at Dartmouth-Hitchcock, Peter and I felt we knew nothing more about our precious
first-born than before, and still loved our child just as any other parent would. But we did have four questions: 1) What is the function of a normal corpus callosum? 2) What caused this abnormality of physical development, for the corpus callosum to be missing? 3) What can be done about it…to improve the situation? And 4) What will his future be like?

I searched the internet and found the answers on the website produced by the National Organization for Disorders
of the Corpus Callosum (NODCC). The corpus callosum is the bridge of main wiring between the left and right hemispheres of the brain that passes information back and forth. The cause of ACC can be genetic, a genetic mutation,
or not. The physical situation of the brain will not change…it will not improve nor will it get worse over time. And through the NODCC I’ve been able to connect with other parents and find out about how other children and adults have been
affected with this and similar disorders. As it turns out, every case is different. So it will be a wait and see life for Jacques. This great organization was able to provide support and information that cannot be found elsewhere, and with it, we feel more prepared for what Jacques’s future may hold. Since his diagnosis he has been tested for a cause, as well as to find out if he has any other associated syndromes, and so far no new news.

Jacques will be 3 years old this month. He loves playing outside, socializing, music, and figuring out how things work. He is naturally happy but has low muscle tone and developmental delay—especially motor. He lifted his head at 8 months, sat after age one, and he now crawls, cruises, and walks with a gait trainer (walker) and ankle-foot orthotics. He attends playgroup twice a week, and will start preschool by the end of the month, four times a week. He has physical therapy twice a week, and occupational
and speech therapies once a week. Plus we take him and his one-year-old sister to storytime at the library, music for toddlers program, and the Nature Nuts learning program at the local conservation school. He certainly is a blessing
and lifts the spirit of everyone who meets him.

We attribute his success thus far to the diagnosis, early intervention, and the NODCC. We know there will be
challenges ahead. As children with a disorder of the corpus callosum get older, they begin to separate both socially and educationally from their peers. That’s not to say that Jacques won’t be successful in life, but he is going to have to
work much harder than the average person. There are some people with a disorder of the corpus callosum that have been able to graduate from high school, go to college, drive a car, have a job, get married, etc.

Every summer we look forward to going to a conference held by the NODCC. I’m not sure where we would be without
this great organization. PLEASE consider a donation for the NODCC in honor of our “Happy Jacques.” Your donation will help Jacques and many others benefit from the research and support they provide.


What is the outcome with
Agenesis of the Corpus Callosum?
(See Dr. Elliott Sherr’s answer below)


Throughout childhood the nerve fibers of the corpus callosum continue to grow and become more efficient even
through the teenage years. At this phase in their development, children with a normally formed corpus callosum make progress in their abstract reasoning and
problem solving, and their social skills mature. A child with agenesis of the corpus callosum may have kept up with his or her peers until this age; however, they may begin to fall behind in schoolwork and social functioning. Therefore,
the symptoms of agenesis of the corpus callosum can become more evident as they grow into adolescence and young adulthood.


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Organization Information

NATIONAL ORGANIZATION FOR DISORDERS OF THE CORPUS CALLOSUM
18032-C LEMON DR PMB STE 363
18032 C Lemon Dr YORBA LINDA, CA 92886

Phone
714-747-0063

Web
http://www.nodcc.org

Email
info@nodcc.org

Mission
The NODCC is the only national organization serving people with a disorder of the corpus callosum (DCC) and their families.

EIN 331029337

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