Raising Money for the National Organization of Disorders of the Corpus Callosum, the only non-profit currently supporting those with ACC.
Our daughter, Gracie, is a bright and cheerful six-year old girl. She loves to dance, color, sing and play with her four-year old brother, Charlie. She is a star at her elementary school, where kids from all grades know her name. Gracie loves all animals, especially horses and her dog, Whitley.
As many of you know, Gracie was born with a rare disorder called Agenesis of the Corpus Callosum (ACC). The Corpus Callosum is a bundle of approximately 200 million nerve fibers, which serve to communicate between the right and left sides of the brain. Gracie is missing this entire piece! In addition, she has been diagnosed with a seizure disorder, and has recently been fitted into leg braces on both legs to assist her in walking. We recently began seeing Dr. Pardo, (pictured above) at the University of Cincinnati Children's Hospital. Next month, she goes back to the doctor for a spinal MRI, as we continue to glean more information about her disorder.
Despite Gracie's disability, she is able to spell her name, can recite the alphabet and count from 1-12 pretty consistently. She has an IEP at school and is repeating Kindergarten this year to give her a great foundation to the rest of her learning. She has a beautiful disposition and smile and warms the hearts of all she meets. She seems to meet her milestones, only at a much slower rate than that of her peers.
Unfortunately there is not enough awareness about this disorder. Like Gracie, many of the kids and adults that have ACC also have other abnormalities that decrease their abilities to function. The NODCC gets information out to families that are newly diagnosed and hosts a convention that allows families to network together. On behalf of Gracie and our family, we hope that you will support us by contributing to the NODCC and helping us to spread awareness of ACC.
With Kind Regards,
Annette and Franky