Sabrina Robineau - Winter 2006

Hi, my name is Sabrina Robineau and I live in Gatineau, Quebec Canada. I am 16 years old and was born with Pfeiffer syndrome. This is my last year of high school.

It’s amazing how fast time flew by. I couldn’t have gotten through it without the support of my mother. She has been there for me since day one. I’m also very lucky to have had an older brother who was always there for me. Despite my syndrome, I still have a normal life. I am able to do everything that teenagers typically do. I enjoy hanging out with my friends, reading, playing basketball and dancing. I love going to school, because it really makes me feel like I belong. Some of my friends don’t even know I have a syndrome!

I remember once when I was in a store with a friend of mine and there were these girls that kept staring at me. It upset me very much and my friend noticed. When I told him about the staring, he said, “Forget about them. You don’t look any different to me, I’m proud to be your friend and I’m proud to go places with you.” This showed me that there are people in this world that will accept you for who you are no matter what. My friends have definitely given me more confidence, and they have helped me out a lot through my toughest times.

My first operation was at 6 months old (heart surgery), and since then I’ve had 18 operations. The most difficult challenge I’m facing right now is my hearing. I have many ear infections, and it makes it very hard to hear well. Even though it gets tough sometimes, I have learned to just take it one day at a time, and I’ll get through it.

Growing up, life wasn’t always easy. I had to deal with a lot of people staring at me. It was then I started to question why I looked different and went to my mother for answers. When I learned about Pfeiffer syndrome, I wanted to teach other people about it. In fourth grade, there was a public speaking contest, and I wrote a speech about my syndrome. I said that even though I may look different, I was still the same as everyone else. My teacher was so impressed with my speech, that she chose me to represent my class in the contest that would take place in front of the whole school! I was very nervous, but I did it and everyone loved it!

I was very lucky during elementary school because I had many friends that knew me since kindergarten, so I fit right in. However, it was when I would go to public places such as restaurants or the shopping mall, I felt really different. There were many situations where kids and even adults would stare at me non-stop. I tried not to let it bother me, but it was hard. My advice to children that have to deal with staring is to try to ignore them or just smile at them.

When I was 11 years old, I had my mid-face advancement operation. That was back in November 2000. It not only changed the way I looked but it changed my life for the better. Although the healing process was very long and frustrating, it was worth it. I’m really glad I went through with it.

Pfeiffer syndrome is so rare that my mother and I were never able to meet anyone else like me. It felt like I was the only one and was often upset.

In 2002, my mom found the Web site, Apert.org (Teeter’s Page), and discovered that there were many kids all over the world that looked similar to me. She told me that they have Apert syndrome, which is similar to Pfeiffer, only those with Apert syndrome also have webbed fingers and toes.

That summer, my mom and I went to a get-together in Myrtle Beach and met many people who not only looked like me but were also going through the same things I went through. It was great and I made a lot of friends. I realized that I was not alone!

April 9, 2005, was my sixteenth birthday, and my mom surprised me by bringing me to Cher’s concert. She had contacted Diana Sweeney, who arranged for us to have front-row tickets and also meet Cher backstage! I enjoyed meeting her; she was so nice to me. I found her to be very down-to-earth. It was definitely a birthday that I will never forget.

In June, with the help of CCA, we got to go to the family retreat in Nashville. It was amazing. For the first time, I met three girls with Pfeiffer syndrome: Olivia, Macey and Natalie. They are all so cute and brought back memories of what I was like at that age. It was great to meet the parents and other kids who were going through the same things I’ve been through. Unfortunately, I will not be able to attend the family retreat in Hershey, PA, next June because it is at the same time as my high school graduation and my prom. After I graduate, I plan to go to college to study law and psychology. I hope to become a criminologist or some other profession that has to do with criminal law. I believe that we can achieve anything if we set our mind to it.

And remember, don't ever give up!

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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