Benjamin's Story

Images Captured by Melissa DePape Phoography

www.melissadepape.com

Benjamin is a three year old boy who continues to defy all odds against him and light up the lives of everyone who meets him. He challenges family, friends and others who come into contact with him to look at disability through his eyes and see just how "normal" someone with a disability truly can be.
 

At sixteen months of age, Ben was in the Stollery Children's Hospital getting an NG tube put in to address his nutritional concerns; his neurologist heard we were there and came to visit. She broke the news that changed our lives forever. Benjamin has a rare neurological disorder called Ponti Cerebellar Hypoplasia Type 3 (PCH3). What this meant for Ben was a low life expectancy of eighteen months and not much hope for development. We were devastated and immediately took to the internet to "Google it" against the advice of our doctors. Ben is one of only five individuals (four living) to be officially diagnosed with PCH3. He is our little anomaly.
 

Now, at three and a half, Ben is thriving and generally healthy. He experiences global delay in most areas but is determined to overcome his own barriers. He is able to communicate using sounds, cries and the occasional word - most often calling for Dad. While he has extreme challenges, he is a willing participant in his day program and loves the time he spends with his Developmental Specialist provided by the GRIT program. The biggest obstacle and fear for us as his parents has been ensuring and feeling confident in the decisions we make for his future. Our goal is to determine what is best for him based on his reaction and comfort level in a given situation (and desperately hope we are able to read his signals accurately). We choose not to focus on his life expectancy and what he cannot do, instead living each day just as any other family would. We choose not to plan our lives around Benjamin but instead choose to plan ahead for him so he can be included the same way as his siblings.
 

Whether it is rough housing, watching Waybuloo over and over or spending time with his grandparents, each day with Ben is a great one. Both his sisters adore him and he brightens the lives of our family and friends with his infectious giggle and twinkling eyes. We feel very fortunate to have Benjamin as our son.

Story Written by Benjamin's mother Kristi Hall-Busque