What has it beenlike growing up with Craniosynostosis? by Nicole Perez

At first, I really didn’t know I had it. As the years passed, I started to understand what Craniosynostosis was about. Thank God, I’m happy now because I’m well and because I have a family that supported me through it all. Sometimes I feel bad because everyone asks me what happened to my head and I have to tell them all about my condition. If I wear a ponytail or braids to school, all of my friends will ask me about it because they can see the scar. 

Even though I feel bad sometimes, I also feel lucky, because as a result of this condition I’ve met Jorge Posada and his wife Laura and their children, Jorge Luis and Paulina. Thanks to the Foundation, I’ve been able to learn more about my condition and how to deal with it from day to day. I’m also proud to be a source of inspiration for many of the parents that are part of the Foundation and still have little children. The parents see that I’m 13 and I’m doing well and it gives them hope that their children will be okay too. 

Someday, I hope to become a mentor for the Foundation so that I can help families and children that live with Craniosynostosis. My dream is to be a pilot. I want to travel the world and show everyone that even though I have Craniosynostosis I can still reach my goals.