Imagine your beautiful baby girl being born and finding out she has a birth defect affecting her quality of life forever. I was born with Bladder Exstrophy, a rare abnormality present at birth in which the bladder and associated structures are improperly formed and occur in 1 out of 50,000 births. Throughout my childhood I’ve had 14 surgeries to make my life as “normal” as can be. To manage my situation, it requires different techniques just to empty my bladder and to prevent serious infections. Recognizing the need to help me and support others with this anomaly, my parents organized a support group campout. It is held annually at Lake Tahoe for families with a Bladder Exstrophy member. My parents came up with the idea after attending a similar campout in Washington State. They decided we needed a support group in California and teamed up with Doug Kreitz (another exstrophy parent) to …show more content…
offers exstrophy families emotional, educational, and social support. Those with this anomaly go through multiple surgeries, incontinence, and urinary tract infections. Because of the stigma of physical differences and incontinence, they often experience emotional problems besides their physical difficulties. Due to the rarity of Bladder Exstrophy, children with this anomaly often feel alone and different from everyone …show more content…
Because the camp lasts only a few days and due to increasing numbers of attendees, it’s hard to visit one on one. Despite this, I have made many new friends. I’ve also gained experience working with children and have learned everyone is unique and has different challenges. One special incident was becoming great friends with a 6-year-old girl named Avery; we made friendship bracelets together. Before I knew it, we were making bracelets for all the children at the camp. Avery was so excited. This campout has taught me to be humble and grateful for the positive things in