Quentin Zaengle - Spring 2007

My name is Quentin Zaengle, and I am 14 years old. I was born March 1, 1993.

When my mom was expecting me, she and my dad didn’t know I had Apert syndrome. My mom had a few ultra-sounds because they thought my head looked different, but the more ultra-sounds that were done, the more the doctors thought everything was ok.

After being in labor for more than 24 hours, my mom was told she needed to have a C-section. When I was born, the OB/GYN that delivered me specialized in genetics and knew right away I had Apert syndrome.

That night I was rushed to Children’s Hospital of Philadelphia (CHOP), where I spent two weeks being evaluated by a team of doctors. I had my first forehead advancement surgery when I was five months old. I had several surgeries on my hands when I was between one and two years old.

When I was 1 1/2, I had a spinal fusion surgery because I had Kyphosis. I spent nine months in a full body brace. I had many minor surgeries after that.

My next forehead surgery was an emergency two weeks before Christmas when I was in first grade. Luckily, I came home Christmas Eve, just in time for Christmas.

My one and only midface surgery was the summer going into second grade, where my craniofacial surgeon, Dr. Scott Bartlett, inserted internal distracters and my parents turned them with a key. My parents took pictures of me every day since my profile changed with each turn.

I’ve had surgeries since then, but they were minor compared to my mid-face operation. My parents are so grateful for all my doctors and surgeons at CHOP, especially Dr. Bartlett, who has done wonders for my face and made me “one handsome guy” as my mom always says. In April 2003, Dr. Bartlett even invited my mom, dad and me to speak at CHOP’s largest fundraiser, Daisy Day, at the Bellevue-Stratford Hotel in Philadelphia. He showed some before and after pictures of me, and mom and dad spoke on stage to tell my story during a luncheon. I even got to talk, too.

I attended Gwyn Nor Elementary School, where I was mainstreamed with all my classmates. I then went to middle school, where I am mainstreamed for all my minor classes; my major classes are taken in learning support.

I have always liked school, and I especially like middle school. When I graduate I want to go to college to be an historian. I like reading history facts about countries, kings and queens. I also like reading biographies and learning about people in history. When I am older, I want to travel to other countries.

In my spare time, I read a lot of history books and Google history dates. I really like to play computer games. I like to visit museums. I play soccer and baseball, and I like to play kickball outside with the neighborhood kids.

I am also a Boy Scout. I recently earned my Tenderfoot rank. I also like camping with the Boy Scouts. I just got picked to be the troop historian, so I get to take pictures on our next trip and maybe help write an article for the scout newsletter.

A few summers ago, I took a kayak lesson with my two sisters and my cousins – it was so much fun! I get to kayak at my Mema and Bepa’s who live in Pawling, NY. I like visiting them a lot because they live out in the country. They live near a lake, and they have kayaks and paddle boats that we get to use when we visit in the summer. We fish there, too. Last year I caught a bass and a pickerel.

I especially like to just be with my family and do fun things with my mom, dad and two sisters Annalise, who is 13, and Lea, who is 10.

If you would like to share your story with CCA, please send an email to Annie Reeves at areeves@ccakids.com. If your story is chosen, with your permission, we will edit and publish it in the CCA newsletter, on the Web site or use it for public awareness programs. Not all stories will be selected.

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