This year I was asked to Chair the Hydrocephalus walk for the Phoenix Area. I had no idea what I was doing. I didn't have a committee and only had one other person that I was working with. We didn't really " Work" together. It was more her telling me what I wasn't doing right and her doing stuff that I didn't know about. But in the end we got what we need and we had an amazing event.
Supporting Hydrocephalus has brought me to meet so many moms and other people like us. Most of the people have kiddo's with hydrocephalus weren't born with the condition and have the condition as a secondary to another condition. For us the prematurity and the brain bleeds lead to the diagnosis of the hydrocephalus and the consequences of the hydrocephalus are long reaching. None the less, the feelings of knowing so many kids at one time in Shunt Malfunction makes me kinda nervous. Almost like I can't be friends with them for fear the Shunt Gods will add us to the malfunctioning list!
The handkerchief's that set our diagnosed kids apart were a big part of the reason that we raised money and walked. I am thrilled to have seen such a successful event and to have been on the learning curve to do so.
Hoping that one day, one step at a time, we can find a cure.
A few feet of Shunt tubing was donated from our local shunt manufacturers were donated and I made over 300 shunt pins. I have some more extra tubing and some extra supplies tat I can't wait to cut into. Each ribbon is 1 inch of love that reminds me that we need a cure!
This years walk was a huge success. I can't wait to find a committee that can work with me and we can work to make a major dent in our goal.
Watch out 2016.
More photos to come from our actual walk!!