Cam's Apert Syndrome Midface Surgery

Hi, my name is Karla Sargeant and I am helping fundraise for my sweet friend Cammy. Here's his story:

Hey there! I’m Cam. I’m 13 years old, I am in eighth grade, and I love the Buffalo Bills and the NC State Wolfpack! I have not just one, but two loving sets of parents and a younger brother named Max. I also have something called Apert Syndrome. Apert Syndrome is a genetic disorder that causes the bones in your head, hands, and feet to fuse together too soon before you are born. When I was born on August 15th of 2010, all of these things were found along with a host of other things that to date, has required 16 surgical interventions such as two open heart surgeries, esophageal surgery, intestinal surgery, two skull surgeries, several hand surgeries, a surgery to place a vp shunt, and a few surgeries to allow my esophagus to be widened. Crazy right?!

Through all that I have been a warrior. In fact, I love the hospital, especially Boston Children’s Hospital, which is where I receive the majority of my care. My mom and dad took me there when I was a baby because some of the best doctors for my syndrome are there, and well they say I deserve the best. Although I have spent a lot of my life needing surgeries and dealing with medical complexities, I am the happiest guy around! I love everyone I meet. I want to know your name the minute I see you, and I find joy in the smallest of things. I love traveling and riding in airplanes, I love the beach, I love sports and cheering on my special teams, I have a fascination with receipts and my whole family always collects them for me so I can add them to my special receipt bucket. I love playing games and I’m an all-around easy to please fella. My diet consists of mostly pureed food, but my favorites are yogurt and mashed potatoes, and I love playing basketball for a program called Journey League.

I have a pretty good life, but one that requires surgeries to keep me able to be my best, and in June, I will need a surgery once again to improve my life called a midface Surgery. Right now, to sleep, I need something called a CPAP. This gives constant pressure so that I keep breathing while I sleep, but because of the way my face is shaped, my eyes are very vulnerable to the high air pressure in my CPAP, so I also have to have my eyes taped closed nightly in order to prevent them from drying out and from getting tears on my cornea. It’s a whole ordeal! This midface surgery that I have coming up will hopefully eliminate the need for those things because the goal is to help the middle part of my face come forward, making breathing easier and providing a lot more protection for my eyes. This procedure will be done in Boston. June 4th is the date, and while I’m excited about it, the rest of my family is so worried and anxious because it’s the surgery that will impact me the most in terms of how I look and will also be one of the more intense/risker surgeries that I’ve had as well. Because of the intensity of the surgery, I will need to be in Boston for around a month or two.

My surgery will take place and then after about a week, the device they use to help the bones in my face move has to be turned by my surgical team for the first three weeks. Once that time is over, I should be able to come home for the remainder of time I have to wear my device, and then I’ll head back to Boston to have it removed. This requires going back to the operating room as well. It’s a procedure that kids with my syndrome have usually around this time of their life, and I know I need this to improve the quality of my sleep and to help protect my eyes. It’s exciting for me. I love Boston and I love my amazing team of doctors, but I know my parents are pretty worried, so keep them in your thoughts and prayers. I’m going to be great, but they may need a few hugs!