Our sweet Aiden was born in 2008 with Apert Syndrome - a craniofacial condition that includes congenital anomolies of his hands, feet and skull. Apert Syndrome only occurs in about 1 in 160,000 births. In our case, it was a spontaneous genetic mutation. [To read more about Apert Syndrome, click here].
We did not know about his condition during my pregnancy. Rather, at birth, we noticed that his hands looked as if he had no fingers and his toes were webbed. The condition also includes premature fusion of sutures in the skull, called craniosynostosis. The open spaces in a baby's skull that make up the "soft spots" and allow room for the brain to grow as the child develops are not normal in a child with Apert Syndrome. Instead, those spaces are made up of skull bone that has already fused together, making it difficult for the head to expand as the brain grows.
These surgeries have given Aiden a chance at a normal life. He uses his fingers well, despite the fact that he is missing one of the joints. There isn't anything he has not been able to figure out and adapt to doing on his own and is performing at the appropriate developmental levels for his age.
While Aiden may look a little different from the average child, it is important to understand that he is just like anyone else. He loves to play, run, jump and adores his big brother. He deserves to be treated kindly and it is my goal as his mother to educate others so that his differences do not inhibit his social acceptance. Please take a few moments to talk about Aiden with your child/family as I do believe that awareness is key!
I know that children and adults might have questions and I welcome the opportunity to answer them. Feel free to contact me by email: moreskeesplease[at]gmail.com if you would like to chat.
To get a glimpse into our story, watch the short trailer for the documentary "Aiden's Journey: Awareness and Hope". The film can be seen in its entirety at www.aidensjourneythefilm.com.
To help us continue Aiden's story in a new documentary piece which will follow him throughout an upcoming major surgery, visit our GoFundMe page.