For One and For Many: Children’s Inn Family to be Honored on Rare Disease Day
FOR IMMEDIATE RELEASE
BETHESDA, Md. — February 9, 2026 —The Children’s Inn at the National Institutes of Health (NIH) will be taking part in Rare Disease Day, an annual worldwide event that aims to raise awareness and generate change for the 300 million people across the globe who live with or care for someone who has a rare disease. The event, hosted at NIH by the National Center for Advancing Translational Sciences (NCATS), will take place at the Natcher Conference Center on the NIH Bethesda Campus on Friday, February 27, from 9 a.m. to 5 p.m..
This year, The Inn is honored to take part in the unveiling of a portrait of Lucy Rector, an eight-year-old from North Carolina who has stayed at The Inn multiple times while receiving treatment for Severe Combined Immunodeficiency (SCID). She shares her diagnosis with her brother, Landon, who was also treated at the National Institute of Allergy and Infectious Diseases (NIAID).
Aisha Campbell, The Inn’s Director of Resident Services and Family Programming, will join Lucy and her family for the unveiling of her Beyond the Diagnosis portrait and will speak on behalf of The Inn at the event.
What makes Lucy and Landon’s story remarkable: Only about one in 70,000 infants born in the United States each year is diagnosed with SCID—roughly 40-100 cases annually nationwide. Both children received life-saving bone marrow transplants at the NIH Clinical Center in 2024, staying at The Inn for several months as they recuperated and continued to be monitored. They have since returned for regular check-ups, as well as a memorable appearance at An Evening for Hope, The Inn’s annual gala.
In addition to playing a role in the unveiling of Lucy’s portrait, The Inn will have a presence in the main exhibition hall, where various entities from around NIH will share some of the extraordinary work being done at each of the Institutes to combat rare and serious illnesses.
“Events like Rare Disease Day shine a spotlight on the groundbreaking research happening every day at NIH,” said The Inn’s CEO Jennie Lucca. “Lucy and Landon’s journey exemplifies why this work matters. Finding cures for rare diseases like this is extraordinary for the advancement of modern medicine, and life-changing for individual families like theirs. Every child who walks through our doors reminds us why this work matters not just for the one family, but for the many who will benefit from these treatments in the future.”
Since 2011, NCATS has sponsored Rare Disease Day at NIH as part of this global observance. This year’s event, which shines a spotlight on the research and advancements of medical knowledge and new treatments that continue to take place at NIH.
Media Opportunities: Reporters interested in covering the portrait unveiling or scheduling interviews should reach out to Sam Angell, Communications and Media Relations at [email protected] or 267-226-9309.
About The Children’s Inn
The Children’s Inn at NIH is a private, nonprofit residential “Place Like Home” for children and their families as they participate in pediatric research at the National Institutes of Health Clinical Center in Bethesda, Md. The Inn reduces the burden of illness by providing free lodging and support services as well as through therapeutic, educational, and recreational programming at no cost to families. The Inn removes a critical barrier to medical progress: by providing free accommodations, The Inn enables seriously ill children from around the world to access groundbreaking clinical research at the National Institutes of Health. This creates a powerful multiplier effect—each child who participates contributes irreplaceable data that can lead to treatments benefiting hundreds or thousands of future patients with rare and life-threatening diseases. For families who might otherwise be unable to afford extended stays near NIH, The Inn doesn’t just offer comfort and community during their child’s treatment—it makes participation in potentially curative research possible in the first place. Since opening in 1990, the Inn has served families from all 50 states and 106 countries. As a partner in discovery and care with the NIH, The Inn strives for the day when no family endures the heartbreak of a seriously ill child.
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For more information about The Children’s Inn at NIH, please visit childrensinn.org.
