Leslie’s dream came true. Aryanna was born in 2003, diagnosed with hypoplastic left heart syndrome, which occurs when the left side of the heart is under-developed. At just one-week old, Aryanna had heart surgery, and although her health improved, doctors kept a close eye on her unusual situation. Through medical conferences, doctors referred Aryanna to the National Institutes of Health (NIH) to determine if Aryanna might have a rare metabolic disorder called Smith-Lemli-Opitz Syndrome (SLOS). The family (Leslie, Grandma Ozella and Aryanna) made their first trip from their home in Paragould, Arkansas to Bethesda when Aryanna was only 18-months-old.
“The first time we came to The Inn, I was just relieved that we didn’t have to worry about paying for a place to stay,” Leslie says. “I knew that otherwise, we probably couldn’t come.”
“Then we walked in and I thought, ‘this is paradise.’” The supportive environment was helpful to the family, particularly when doctors at the National Institute of Child Health and Human Development (NICHD) diagnosed Aryanna with SLOS. People who have SLOS are unable to make enough cholesterol to support normal growth and development. Aryanna has had a total of three heart surgeries. Her mother and doctors joke that she’s a walking contradiction, as she’s a heart patient who takes cholesterol to help treat her disorder.
Aryanna is now a spunky eight-year-old, and the Colliers have made many visits to The Inn over the years. A serious animal lover, she enjoys spending time with Vi, The Inn’s therapy dog, and also took a trip to the National Zoo during one visit. She can easily be spotted running through The Inn’s hallways wearing her trademark light-up sneakers and is a regular fixture in the Playroom. When the family needs to relax, they read together. “We love the baskets of children’s books in each room,” Leslie says. “Aryanna asked her grandmother to read every single one—even the ones in Spanish!” And while there is lots of fun to be had at The Inn, Leslie says the true value for her family is much deeper: “The Inn means a chance to make Aryanna’s life better.”