Running Our Own Race —Trevor Dykes

Trevor (he/him) lives in Columbus, Ohio, with his husband and their two children, Emerson and Ellis; both live with Prader-Willi syndrome, and one is on the autism spectrum. A tenured corporate strategist, Trevor writes from the intersection of professional storytelling and the daily reality of rare disease caregiving. As an adoptive parent and caregiver advocate, he finds joy in supporting prospective adoptive parents, advising on LGBTQ+ inclusion, and bringing awareness through lived experience.

How we celebrate birthdays with Prader-Willi syndrome

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,…

Sometimes, navigating PWS simply means weathering the storm

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…

There’s no autopilot when raising 2 kids with Prader-Willi syndrome

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…

Why we said yes to adopting 2 children with Prader-Willi syndrome

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…


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