Kayla and Family on Playground

Nine-year-old Kayla from Elmwood Park, Illinois, has been coming to The Children’s Inn and the National Institutes of Health (NIH) with her mother Dorelia and father Carlos since she was one. She navigates through The Inn like it’s a second home, showing off her fashion sense in bright dresses and matching nail polish. “She’s grown up here,” says Dorelia. “This is her favorite place.”

When Kayla was four months old, she started developing fevers and rashes and was not eating. Persistent in their efforts to find out what was wrong with their daughter, Kayla’s parents took her to 22 different specialists. When Kayla was 15 months old, her parents met a rare disease professor at the Children’s Memorial Hospital in Chicago who suggested that Kayla might have neonatal onset multisystem inflammatory disease (NOMID) – a disorder that causes persistent inflammation and tissue damage affecting the nervous system, skin, and joints. With this possibility, Kayla’s parents started talking to other parents in the online community, who recommended that they go to the NIH.

Within one day of being at the National Institute of Arthritis and Musculoskeletal and Skin Diseases, Kayla was officially diagnosed with NOMID. At the time, she was the youngest patient to receive this diagnosis. Since then, Kayla has been taking a daily injection of Anakinra and has not experienced any other rashes. With only about 100 diagnosed cases worldwide, Kayla’s early diagnosis and treatment was crucial to her health and development. While the sight that she lost in one eye when she was 11 months old was never regained, Kayla has not had any other major developmental issues and her hearing has improved. When she was younger, Kayla made multiple visits to the NIH each year, but because she has been doing so well, she only came once this year and will likely come even less frequently in years to come.

Leaving three dogs back home, Kayla enjoys playing with therapy dog Vi when she is at The Inn. She also loves playing air hockey in the Game Room and hopping from the life-size xylophone to the putting green out on the Park and Playground. Dorelia enjoys the activities that The Inn offers and is amazed at the dedication of The Inn’s staff and volunteers. She especially enjoys Family Dinners because they give her the opportunity to interact with other families.

Kayla also engages in other fun, therapeutic activities that help strengthen her body. She enjoys yoga, which helps with her arthritic symptoms, horseback riding and playing the piano. Recently, Kayla even ran her first 5k race while in Mexico. “I don’t think she would be here if it wasn’t for the NIH,” says Dorelia. “It’s been life-saving.”