Some families have just one member diagnosed with Chiari. And 120 of those have two or more family members who were diagnosed.

They're just kind of helping out of the kindness of their hearts, to contribute to knowledge.

We are really trying to discover the genetic and environmental factors that contribute to Chiari. We do think Chiari is congenital, so it's something people are born with, but may not show symptoms until later.

Just why, you know? We've had family members that have had cancers in the last four to five years and to have this happen to our child, you can't even describe the feeling.

We're here to bridge the gap between medical professionals and the family.

That's how birthdays were in our house. All hateful charades of pretty clothes, expensive presents, and ugly words . . .