Love Never Sinks was honored to support Elmer, a 6-year-old living with Lesch-Nyhan Syndrome, by helping provide an adaptive activity chair to increase his comfort, independence, and ability to participate in daily activities like eating, playing, and learning. When Elmer’s physical therapist recognized his need for additional seating support, Wheelchairs 4 Kids stepped in to help coordinate resources, and Love Never Sinks was grateful for the opportunity to assist. As one of three siblings in his family affected by Lesch-Nyhan Syndrome, Elmer’s story highlights the importance of access to specialized equipment and compassionate support. Together with partners like Wheelchairs 4 Kids, we continue our mission of helping families navigate the challenges of Lesch-Nyhan with information, collaboration, and hope.

As someone who first came into advocacy as a parent and caregiver, these kinds of weeks carry a lot of meaning. They are not just professional development—they are deeply personal. Every session and every conversation circled back to the same core question: how do we better support patients and families while also moving research, understanding, and treatment forward?

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.