Columns

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…

It was 6:47 a.m. when our son Jake, who has Prader-Willi syndrome (PWS), asked for the eighth time, “When are we leaving for our weekend vacation to Colorado?” The trip was three days away, and I gave the same answer I’d provided seven times before: “We are leaving on…

Summer always used to sound so simple to me. It meant slower mornings, later bedtimes, popsicles on the porch, and playing outside until the sun went down. Now that I’m the parent of a child with Prader-Willi syndrome (PWS), summer isn’t so much this idyllic setting, but rather a…

There is a corner of my yard that quietly tells the story of four generations. The peonies blooming there started in my great-grandmother’s garden. When she passed, my grandmother replanted them in her backyard. When she was gone, I knew I wanted them in my yard. Every May, those same…

Caregiving for someone with Prader-Willi syndrome (PWS) is a role that often requires extraordinary commitment, consistency, and compassion. Much of this work happens quietly, behind the scenes, and without recognition. Yet it is some of the most important work that gets done each day. When I think about…

When our son, Robert, was born in 1989, we never dreamed we would still be advocating for him at age 37. I was sure I could fix whatever problems he had. I thought he would eventually have a normal life. Low muscle tone was a problem from the start. At…

When you open a can of soda, you might not give much thought to the little aluminum tab you pull up. For most people, it’s just a piece of metal, tossed away without a second thought. But for our family — and especially for my son living with Prader-Willi…

Note: This column describes the author’s own thoughts about Vykat XR (diazoxide choline). Not everyone will have the same response to treatment. Consult your doctor before starting or stopping a therapy. Anyone who has enjoyed a meal with someone with Prader-Willi syndrome (PWS) has likely noticed their obsession with…

February has two different meanings for our family. On one hand, it’s the month of roses, chocolates, cards, and heart-shaped everything. On the other, it’s Rare Disease Awareness Month, culminating in Rare Disease Day on Feb. 28. It’s a time when families like ours, who are living with…