Child's rare disorder fuels mom's desire to help national non-profit

Cindy Chrysler had no idea what chiari malformation was until her daughter was diagnosed with it in March of 2008.

Now she knows people all over the country who have it, including one from the small Michigan town her family calls home. Chrysler would like even more people to be made aware of this congenital condition, so she's working on a fund-raiser for the American Syringomyelia & Chiari Alliance Project (ASAP).

"I meet so many people who have this, you wonder how people don't know about it," Chrysler said.

Chiari malformation is an abnormal development in the lower part of the brain or cerebellum. Essentially, a portion of the brain extends into the spinal canal, to varying degrees. The condition affects about one in 1,000 babies born each year, but symptoms may not appear until later in life. 

"There are people who go for years before finally getting a diagnosis," Chrysler said, adding her daughter's condition came to light when she was diagnosed with epilepsy at age 7. "It took me a while to find anything about it at first. When I started reading about it, I got scared."

People with the condition may experience headaches, blurred vision, balance and coordination problems, muscle weakness and many other debilitating symptoms. Chrysler's daughter is fortunate, in that her malformation is not severe. The other child affected in their community is not as fortunate.

As she began to connect with other families through ASAP, Chrysler felt better about the future. Although rough physical activity is not recommended, her daughter does participate in some sports where there is little risk of contact.

"I'm trying to find more things she can do," Chrysler said.

ASAP provides support for families, funds research and builds awareness for a group of diseases few people have ever heard of. On July 2, Dixie Motor Speedway in Birch Run (Dixie Highway and I-75) will host a fundraiser and awareness event for the organization as part of its "Supersprints" race night. ASAP will get a portion of the tickets sold by volunteers, and Chrysler is collecting items for a silent auction. She welcomes the opportunity to give back to an organization that is so important to her family and especially, her daughter.

"If I can do something now to help, it will affect her future," she said. "It's been good to find these people."

To contribute to the July 2nd silent auction, to purchase tickets that benefit ASAP or for more information, contact Cindy Chrysler, cindychrysler@gmail.com or call 989-871-6330.