Dyskeratosis Congenita

On February 18, 2017 we packed up a rented minivan and took off on a 10-day, epic family adventure. Thanks to the Make-a-Wish organization, we were off to California to visit Disneyland, Legoland and most importantly to show Dax the ocean. He loves water with a sweet passion and he had always wanted to see [...]

This is Random Acts of Kindness Week (February 11-18), serving as an important reminder of the value of being kind to one another. Being kind is of course important — or should be — to everyone, all the time. But kindness is especially meaningful to those parenting sick children. Sometimes, it’s the only thing that [...]

Our story of parenting a medically rare child starts with the premature birth of our son, Dax Michael in 2012. After being home from the NICU for a few months, we started to notice that Dax wasn’t meeting milestones and hoped that prematurity was the cause. He was enrolled in physical therapy right away and [...]

I sat on this alpine lake beach eating huckleberry cobbler 341 days ago and whispered, “hold me up” to these mountains as storm clouds rolled in. I had been under a storm cloud of my own in recent days; 35 miles away, my son, Dax, was hospitalized with what appeared to be bone marrow failure. [...]