Guest Post: Reflecting on Daily Life with Apert Syndrome

Here at PYD, we frequently hear from people around the country who express how much they wish a program like PYD existed in their area. That is one reason why we’re working hard on a program to help other organizations replicate what we do, and it’s also why we engage in so much training and technical assistance for schools, businesses, and other nonprofits around the country through our National Center.

One of our frequent correspondents is Ann English of Georgia, whose granddaughter Morgan lives with Apert Syndrome. Ann recently shared with us an essay by Morgan about what it is like to live with Apert Syndrome. You can read it below:

 Hi! I am Morgan, I am 15 years old and I was born with a rare syndrome called Apert Syndrome. People notice those of us with Apert Syndrome because we look different and maybe act or talk differently from others. They wonder how we are feeling and how the world looks to us.

 Apert Syndrome is a genetic disorder in the broad classification of craniofacial anomalies. It can be inherited from a parent who has this syndrome or it can be fresh, meaning that you are the first person who has it in your family. In my own experience, having Apert Syndrome means nothing to me until someone asks me questions about why I look different. You feel the same as everyone else on the inside but on the outside, that’s where you are different. Photo of Morgan

 When you have Apert Syndrome, there is a 50 percent chance that you will pass it on to your child. Doctors often suspect Apert Syndrome at birth because of how a newborn looks. There is no cure but surgery can help fix some parts. The first surgery releases the skull bone fusion. The second is the midface advancement. The third surgery corrects wide-set eyes. These are the main Apert Syndrome surgeries.

 Eugene Apert discovered Apert Syndrome in 1906 and the whole world changed for some people. Because of him, we look at Apert Syndrome differently. We ask ourselves, “What is Aperts and why is it on our planet?” If you ask me that question, I honestly don’t know. People think that when you have Aperts, you know what it is but I am here today to prove them wrong. From the point of view of a girl who actually has it, it’s the same as not having it. You feel the same and on the inside you’re the same, but on the outside you are different.

 We as American teens have this sense that everyone has to be like each other and we are wrong. As we grow older and wiser, we realize it’s true that everyone is not the same. People think that those with Aperts need special care and that they have to do everything for them, but you don’t have to baby them. People with Aperts can do things that an average person can do. They can play sports, they can be wild and crazy, and most importantly, they can just be themselves.

 I’ve told you about the medical aspects of Aperts, so let’s talk about daily life and what people with Aperts are physically capable of. Everyone should have the opportunity to play a sport, especially if you have Aperts.

 Basketball to me is like candy to a little kid. I love basketball. I don’t care if I’m on the bench the whole game, I just want to be part of the team. As a player, I observe the people around me. When players look at me, I wave and say hello, even if we are in the middle of a game. As a player, it is so great to know you are loved on the team. The upperclassmen on my team help me and encourage me to shoot the ball. Also, the coach puts everyone on the bench in the game so they see what it is like to play.

 As a student, the school I go to is amazing. The teachers know what I have but they treat me like a normal kid. It’s so cool and amazing when you know that the teachers at your school want to help you and care about you. They make sure that I can do things in advance, but if I can’t do something, they accept it and give me another option.

 People keep asking me, “How do you do all this? How do you go to school, play a sport, do homework, and still have good grades when you have Aperts?” Well, if you think it’s easy, it’s not! I work hard from 7:30 in the morning up to 9 at night some days. After all that is done, I like to go home and relax like a normal teenage girl.

 One last thing: I am a triplet. I have a brother and sister who do not have Aperts, and one older sister who also does not have Aperts. I love to be with them and we have a great time together. That’s how I know that while we are all different, we’re all part of one big family.

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