Running Our Own Race - a column by Trevor Dykes

Splashing around in the pool at a resort in Florida, our 1-year-old son, Ellis, was having the time of his life. He was all giggles as I pretended his infant pool lounger was a speedboat, jetting him through the water and spinning him in circles. “Three … two … one…

We have a nonnegotiable evening routine in our house: get the kids to sleep, spend some time resetting for the next day, then give growth hormone injections before going to bed ourselves. Ninety-nine percent of the time, both of our kiddos — Emerson, 4, and Ellis, 1 — sleep through…

August is a busy month for my family. Both of my kids have birthdays this month, one day apart. My daughter, Emerson, is turning 4, and my son, Ellis, will be 1. This year, we’re celebrating them together with a Neverland-themed party. Birthdays and holidays are like my Super Bowl,…

The morning started like any other. We woke up to our 3-year-old daughter, Emerson, bouncing on the bed, body-slamming us, and laughing, while our 11-month-old son, Ellis, was in his bassinet, babbling and smacking his aquarium toy until it turned on. Time to start the day. I tried to sneak…

My husband, Jamie, and I have developed a constantly evolving system to plan for the week ahead. Standing in the kitchen with multiple calendars open, we map out the week’s schedules and logistics. We do a pretty good job. Bonus points if we can coordinate appointments around the same time…

We’ve adopted a family motto: “Run your own race.” Both of our kiddos experience global developmental delay due to Prader-Willi syndrome, so my husband, Jamie, and I learned very quickly that we had to adjust expectations when it came to the typical milestone charts and timing. In…

Four years ago, my husband, Jamie, and I had never heard of Prader-Willi syndrome (PWS). We didn’t know it existed. And we certainly didn’t know that an email received at 10 p.m. on a Tuesday in late September would be the start of the most beautiful, challenging, and life-changing…