Evan

My son Evan was born in 2004 with Apert Syndrome.  This is a rare and complex craniofacial syndrome that causes the bones of the skull to be fused together (normally there are 6 separate bones that allow for growth of the brain).  Also the fingers and toes are fused together.  If you’ve seen the movie Wonder, Evan lived through many of the same things that Auggie did, just a slightly different condition.  

Typically kids with Apert Syndrome also have the sweetest personality and are very enthusiastic fun loving people.  And this was definitely true for Evan. He loved life.  He loved to sing, dance, and play.  He loved cars and Hot Wheels.  He played on the Miracle League baseball team.  He had a lot of friends who supported and loved him.  Connecting with people was Evan’s superhero skill.

Evan had the most amazing effect on everyone he met.  People would meet Evan and just be inspired to be a better person, do more in life.  Because they would see all the challenges he had, yet he was so happy and lived life to his fullest.

He lived his life enthusiastically and courageously, despite having about a dozen reconstructive surgeries and challenges breathing due to a narrowed trachea (windpipe).  Unfortunately, what was to be his final surgery in a 9 year treatment plan, proved too difficult to recover from, and he died on May 22, 2013.  He has shown me that love never dies and can even outshine grief.