When a child passes away, there are no words that can take away the pain of a parent’s loss. It is unimaginable to think of a child dying, but in many people’s lives this is their reality, especially in those affected with autosomal recessive polycystic kidney disease (ARPKD), which affects 1 in 20,000 children.
This became a reality in the lives of our family three years ago, when our son Bowen lost the fight to this disease after 13 days. We had no idea that Bowen was going to be born with ARPKD. After he passed away, we were devastated, heartbroken and left with a lot of questions unanswered. Even though we were only able to hold Bowen in our arms for a short while, he will hold a place in our hearts forever. Bowen may not physically be here with us, but the love we have for him still exists.