Our Week at the NIH: A Journey with Purpose
Last November, our family packed our bags and headed to the National Institutes of Health (NIH) in Bethesda, Maryland, for what would turn out to be one of the most meaningful experiences we've ever had.
My son, Reid, is 18 and has a variant of Lesch-Nyhan (LN). We were invited to the NIH so Reid could participate in a research study—and while we weren’t entirely sure what to expect, what we found there was a beautiful mix of science, compassion, and hope.
We stayed at The Children’s Inn, and I can’t say enough good things about it. The staff was incredibly friendly and accommodating, and the entire space felt like a home away from home. Each wing of the building had its own kitchen (three in total), and every family had their own fridge and pantry space for groceries. They even offered a grocery delivery service right to campus, which made things so much easier during our busy schedule. Every day, Reid had a special surprise waiting in his cubby—just a little something to brighten his day.
The Inn had an accessible playground and fun, welcoming spaces for kids scattered throughout the building. It was clear that this place was built with families and kids in mind.
One of the many ways the NIH helped reduce stress was by arranging for a driver to pick us up from the airport when we arrived and take us back when it was time to head home. That small detail made a big difference—especially after a long travel day and a full week of appointments.
We were there for five days, and since Reid is an adult with a variant of LN, he was able to complete a full schedule of testing. Our days usually ran from about 8 a.m. to 4 p.m., though the staff was great about adjusting things depending on how Reid was feeling. We had the privilege of working with Dr. Oleg, Shannon, Kevin, and Kate—four incredible people who checked in constantly to make sure Reid was doing okay. They really made him feel like more than just a participant; he was part of the team.
Reid was amazing. He jumped into each test and appointment with a willingness that honestly inspired me. He knows his efforts can help researchers better understand not just his variant, but classic LN as well—and that sense of purpose kept him going. The team also made sure our schedule was balanced with downtime and opportunities for a little fun.
Midway through the week, I was asked if I’d like to participate in a study for carriers. I didn’t hesitate. I signed up for a 24-hour urine collection (yes, it’s as fun as it sounds), a blood draw, and a stool sample. Reid’s dad and sister also provided stool samples to support the research. It felt good to contribute in a hands-on way.
We even snuck off campus twice—once by subway to see friends in D.C., and once with some friends who picked us up. Those little breaks helped us catch our breath and remember that life outside the lab still exists.
When we left, we were definitely tired—but also proud. Proud of Reid. Proud of the work we contributed to. And incredibly grateful for the people who made it all possible.
We came home with more than data points. We came home with a deeper sense of connection—to the research, to the people doing the work, and to the hope that drives it all forward.
- Andrea Holker
Mom of Reid and Stasia, Wife, Gardener, Permaculturist, Lifelong Lover of Learning, Passionate Lesch-Nyhan Advocate