Meet Owen: Aspire Kids Team Raises Money, Awareness for Rare Condition

Aspire Kids Team Raises Money, Awareness for Rare Conditions

Team members at Aspire Kids are spotlighting Agenesis of the Corpus Callosum (ACC)

January 2015 – In response to the ALS Ice Bucket Challenge, team members within Aspire’s Kids enterprise have decided to spread awareness about the rare conditions that affect some of the children we work with everyday. Each quarter, Aspire Kids will be raising awareness about an organization that is working to help children with these rare diagnoses and their families by sharing the story of an amazing child or family at Aspire. Aspire team members will be personally donating to the organization and providing an opportunity for you to donate, too!

Meet OwenOwen

Our first featured child is Owen who has Agenesis of the Corpus Callosum, or ACC. ACC occurs when the corpus callosum (a large bundle of nerve fibers in the center of the brain that allows information to pass between the two brain hemispheres) fails to develop either partially or completely.

The Diagnosis and the Plan

“After we learned from prenatal testing that Owen had Agenesis of the Corpus Callosum we searched the internet for any information we could find,” said Owen’s mom. “We found the website for the National Organization of Disorders of the Corpus Callosum (NODCC). There we found a wealth of information about what we might expect to see in our child. There were brief outlines of symptoms as well as links to medical articles. Most importantly, though, the website showed many pictures of children with callosal disorders. These happy, smiling children and their families let us know that this could be okay.”

Finding Help

“Because we knew before he was born that Owen had ACC we were able to utilize Early Intervention services as soon as he was born. We had speech, occupational, physical and developmental therapists who came to our home to provide assessments and therapy services. Our therapists have helped us focus on small, incremental changes that over time have resulted in huge gains for Owen.”

Owen’s Future is Bright

“Owen is now walking on his own and talking in sentences. Things that, at one time, we weren’t sure were possible for him,” said Owen’s mom.

Owen continues to receive occupational therapy at Aspire Kids where he is working hard on the endless achievements that are possible for him. His smile and excitement are contagious.

Owen’s story is an excellent example of how information and research through the NODCC combined with therapy services provided through organizations like Aspire can come together to give a child and his or her family hope for the future and support to achieve their dreams.

To make a donation to NODCC, please click here.

For more information about Aspire Kids, please call 708.236.0979 x106 or email


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