We knew right away that we were starting down a long and challenging journey.
Our story started back in July of 2008, when our daughter Addison was born. When she was less than a week old she was diagnosed with a genetic condition called Smith-Lemli-Opitz Syndrome. As a result, we spent the first month in the hospital, mostly in Pediatric Intensive Care Unit caring for her.
After countless tests, procedures, surgeries, and hopeful thoughts we decided to bring Addison home. There was nothing left to try, so we packed up and left for home with Addison not expected to survive the short car ride home. In true Addison style and with her fighting spirit, we were fortunate to get 10 birthdays with her. We witnessed her defy the odds with every moment and inspire all who were lucky to know her.
In those 10 years, we spent hundreds of nights and days in the Barbara Bush Children's Hospital's various units. When Addison's brother was born in April of 2013, logistics became overwhelming as her time in the hospital became more frequent. The resulting years were incredibly difficult and draining on our small family to find any type of normalcy.
Through all the challenges, Addison was the sweetest little girl with a smile that brightened up the room.