Aiden was born in 2008 with Apert Syndrome - a craniofacial condition that includes congenital anomalies 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.

Aiden has already had several surgeries and will need more during the next few years of his life. At 9 months old, he underwent the first stage of the surgery to separate his fingers and toes. Three months later, the second and final stage surgery was performed to give him all 10 fingers and 10 toes! At 15 months old, he had another operation to address the issues with the fused bones in his skull - the surgeons opened up the skull to give his brain adequate space to grow. Most recently, he underwent a mid-face advancement procedure in which he wore a metal device surgically attached to his skull and mouth. We used a small tool to manually turn the device daily which slowly pulled the middle part of his face - from the brow bone to the upper jaw - forward. You can learn more about this major procedure here, or, about his entire medical journey, by clicking here.

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] 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".

We are also excited to share that a follow-up piece was produced in 2017 called "Aiden's Journey: The Next Chapter". This 20 minute documentary followed Aiden over a 10 week period through the mid-face advancement surgery and recovery. We are honored that it has been selected to screen in numerous film festivals from coast to coast including:

We are working on a way to make this viewable online or via iTunes and will post an update on social media once that is complete!

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