Photo of Luciano with Zilly Photo of Luciano with Zilly

Finding Hope 3,000 Miles Away from Home

When Luciano was two years old, he suddenly developed a high fever that persisted for more than a week. Shortly afterward, his right eye became swollen, and Martha, Luciano’s mother, knew she needed medical help. However, their local hospital had limited resources, so the family was referred to a Children’s hospital located in Lima, Peru’s capital. After performing two biopsies, doctors told Luciano’s parents there could be several possible diagnoses. Luciano soon developed severe rashes that slowly covered most of his body. He was very sick. One of the doctors then connected the family with Dr. Alexandra Freeman, the director of the Primary Immune Deficiency Clinic of the National Institute for Allergies and Infectious Diseases (NIAID).

In 2019, Martha and Luciano traveled more than 3,000 miles from Peru to the NIH. After a prolonged inpatient stay to stabilize his condition, the family moved to The Inn. During the next eleven months, Dr. Freeman treated Luciano for his rare primary immune disease with a wide variety of medications to improve his immune system and treat the infection. His health improved, and he was able to return to Peru for a few months.

His medical team also prepared Martha for the possibility of Luciano undergoing a bone marrow transplant. In September 2020, Luciano’s family traveled back to the NIH and The Inn for Luciano’s bone marrow transplant under the care of Dr. Corina Gonzalez from the Immune Deficiency Cellular Therapy Program at the National Cancer Institute (NCI). Dr. Gonzalez prepared Luciano for the transplantation and his mother to serve as his donor of stem cells. When they stayed at The Inn, staff noticed a happy and energetic little boy whose laughter was heard daily. Here, the mother and son found a support system that wasn’t available in their hometown. The Inn provided a safe environment, warm meals, and plenty of activities for the family to enrich Luciano’s experience. Now at the age of six, Luciano has already made strong friendships with other Inn children.

This month, the family will joyfully celebrate the one-year anniversary of Luciano’s bone marrow transplant, as well as the recent medical evaluations which show the brave boy is thriving. “When there is life, there is hope. Each day is full of happiness for Luciano. We are very happy to stay at The Inn,” shared Martha. In December, Luciano and Martha may be able to travel back to Peru to reunite with Luciano’s siblings for the holidays.

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