The event was held inside the mall, before it opened. Since the weather is so unpredictable around here, it was a great indoor venue with plenty of room for everyone to walk. There was free food, face painting, mascots such as the Chick-fil-A Cow, the HEB Buddy, and the "Build a Bear" bear, and a "dance party" to kick the event off. There was lots of music, a middle school marching band, and a MC to keep things rolling. It lasted about 2 hours and I think we all had a good time being there for a great cause.
We even got to meet a family whose mom had passed away from complications from CMT. The daughters (who all have CMT themselves) were there in her honor. It is RARE for someone to die from CMT, but in extreme cases, it can affect respiratory muscles and lung operation. We have never met anyone else with this disease so it was great to talk to a family who lives with this and know what we are facing. These women didn't seem to have severe symptoms, that we could tell, and have all had children and normal lives. So it was very encouraging. Obviously Brody may not have the same type of CMT as them so we can't compare cases, but still, it was great to get to talk to them.
After attending the walk, I was reminded of why I love these things. I participated in these type events in high school, as well as when I was working. I coordinated all the community events for a big bank and had the opportunity to attend benefits and fundraising walks for numerous causes such as American Cancer Society, the Heart Association, etc. I love the encouraging stories, the attitudes of the patients who are there cheering you on, and the joy on their faces when they see that people they don't even know are supporting their cause. So I would love to find ways to bring more awareness and even coordinate something like the MDA Muscle Walk here in our area. (Apparently, the walk is relatively new and we don't have them in our area.) We've already talked about planning a Brody's Walk 5K/10K to raise money for Brody's expenses, as well as donate to the MDA or CMTA. Hopefully its something we can get together this fall!!
So back to SETX MDA Muscle Walk!! Here are some photos of our day. And please excuse some of the terrible photos. The mall was not well lit and I didn't bring my flash. Plus we were walking faster than I thought we would so it was hard to get great shots.
My family decided at the last minute to have shirts made for Brody. In front is all my immediate family that lives in town (minus Uncle C and PawPaw). Behind is the Lumberton Student Council who raised the money and walked for Brody!
Just the family. There were pictures being taken from like 3 different angles so people are looking all different ways..and you can't even see Matt in the back. But you get the idea :)
The Marching Band leading the way.
Some of the students pushed Brody some of the way. (he was busy licking donut glaze from his fingers)
Both of my grandmothers (Nana and Nonnie)
Matt, Nonnie, and my mom
Even Baby Brooks had a shirt! He loved being pushed in the stroller for a while.
Can you guess what he's doing here.....
Best Buy had set up a Kinect and he was ALL OVER IT! He knew exactly what to do when he walked up and was a pro! You may not be able to tell, but he is coming down out of a jump right here. This game had him jumping and leaping all over the place. It was great therapy for him. Do you think we could right a XBOX 360 and Kinect off as a medical expense?