Hydrocephalus Teens Take Charge – Chiara Speaks Up!
By Chiara Rocciola
My name is Chiara and I am thirteen years old. My experience with hydrocephalus is with my sister. My sister was diagnosed with hydrocephalus before she was even born. Two years later I was born into a loving family and I had the most amazing sister ever! I remember when I was little that sometimes I had to go to my grandparent’s house because Lexi was in the hospital. When they were gone I had so many questions like: is Lexi OK? When do I get to see my mom and dad? And just waiting until the moment when I get to see them all again.
Last year Lexi had a shunt malfunction and the whole family was terrified. I was most upset because I couldn’t visit my mom, dad and sister because of the swine flu break out and they didn’t want anyone under 13 visiting at the hospital. I missed my parents and my sister so much. I remember my mom sent me a picture of Lexi and I saw that almost all of her hair was gone; there was only a little patch left. I felt so bad and I couldn’t even imagine going through all that my sister has gone through. She has the most courage and strength of anyone I know! I remember my mom telling me that before Lexi was born the doctors said she wouldn’t be able to hear, talk, see, or even move, but my sister proved them wrong. She can do all of those things—my sister is a miracle and my inspiration!
The hydrocephalus walks have been a big part of my life. My first walk was when my mom was still pregnant with me. I have participated in thirteen walks since then. I love the thought that the walks are a place to meet new people and to fundraise. It is especially good for younger children to know that there are other people who are dealing with this and can relate to your experiences.
I am excited to participate in Teens Take Charge because I want to be a part of helping find a cure. It sounds like a great opportunity to meet new people and to hear their stories. We need to spread the word about hydrocephalus and this is a great way to do that. We need a cure and we need the cure now!