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Julia Kain of Ocala, Florida travels to The Children’s Inn for a week out of every month so that doctors can study and treat her rare, genetic, neurodegenerative disease called Niemann Pick, Type C (NPC). It took several years and a good deal of determination on her mother Tonya’s part to enroll Julia in a clinical trial at the NIH, where doctors are working to slow the progression of the disease.

“Julia was always a unique child from the day she was born–February 29th, 2000, our leap year-day baby,” says Tonya Kain. When she was seven-months-old her pediatrician noticed her spleen was slightly enlarged. “I was told it was nothing to worry about, she was just getting over a cold, and it would go back to normal, says Tonya. “Julia began walking at 13-months-old, but she was very clumsy and fell frequently. Her doctor reassured me that this was normal.” Tonya had begun to worry though, and had a feeling that there was something wrong with her daughter, but years went by without a significant change in Julia.