Walking for a Cure

September is Chiari Malformation Awareness Month. Chiari Malformation is an often misdiagnosed defect. Many people go years - well into adulthood - before they are correctly diagnosed and receive the appropriate treatment. Many times that treatment is merely pain management - the only other option is brain surgery. Then there are the other times - the times when the correct diagnosis is never found - that's when a Chiari Malformation can become fatal.

Like many, many other diseases and defects there are way too many people dealing with this and way too few options. Research money is needed so that physicians can be educated and treatment options can be discovered.

One way the Chiari Malformation Foundation raises those research dollars is through the "Conquer Chiari Walk Across America." On one Saturday morning each September, in cities across the U.S., people gather - those with Chiari and those supporting people with Chiari - to walk. Donations are taken and all funds go to Chiari research.

Last weekend we experienced our first "Conquer Chiari Walk".

I had no idea this walk took place and stumbled upon information about it a few weeks before - so participating was definitely a last minute decision. Autumn was three weeks post-op and starting to really get back to her old self so we decided it would be a great thing to try to do. I wanted Autumn to see that there are so many other people out there who have exactly what she has - some who have undergone the same surgery she did - and they are just fine. Adults, teenagers and children just like her, all living their lives. I wanted her to see that she isn't the only one.

A couple weeks before the walk we found out that Steve was going to have to work and wouldn't be able to go with us, so our team consisted of my parents, me and both kids.

It was a great experience. There were over 600 people there - 600 people who have all been effected by the same thing that has effected my family. 600 people who all, at one time or another, were blindsided by this diagnosis. All these people who have had a doctor look at them and say the words "no cure" and "brain surgery". They get it. They get all. the. feelings.

While I found comfort being surrounded by all of the parents whose children are dealing with this, Autumn loved seeing all of the kids that were there - especially all of the little girls. Little girls just like her, many in her age range - who looked just like her, down to the scar on the back of their head. It was just what I wanted it to be, a way to show Autumn that there are so many others. Things are so much easier when you know you aren't alone.

Photo courtesy of  Tampa Bay, Florida Conquer Chiari Walk Across America