Natalie Holmes’ medical issues are so complicated that her parents sought expertise not only at Riley Hospital for Children at Indiana University Health but also at other top medical centers across the country. But when it came time for a series of delicate brain surgeries — bringing her total to five —the 16-year-old insisted on Riley: “Since I know I’m so complex, things can go downhill really fast. If so, I want my team of people who know me.”
Natalie’s relationship with Riley started six weeks after her birth to Sharn and Melody Holmes on April 24, 2001. Her medical team would span many specialties, and zeroing on her diagnoses would take five-and-a-half years. “This is a process — that’s how unique Natalie is,” Melody says. “Throughout all this, we felt that it was all in God’s timing. “
Natalie’s conditions are genetic in nature. Among them are: a mitochondrial disorder, which causes a range of neuromuscular symptoms; Ehlers Danlos Syndrome, which affects connective tissues; and Chiari malformation, a serious neurological disorder where the brain pushes downward beyond the base of the skull. Pediatric pulmonologist Hasnaa Jalou, M.D., neurogeneticist Larry Walsh, M.D., otolaryngologist Bruce Matt, M.D., neurosurgeons Jodi Smith, M.D. and Andrew Jea, M.D., gastroenterologist Girish Subbarao, M.D., and metabolic geneticist Bryan Hainline, M.D., Ph.D. are among the pediatric specialists involved in her care at Riley.
“Natalie is an example of where genetics is going,” Dr. Hainline says. “Precision medicine [an emerging model in which medical care is tailored to an individual’s genetics or other molecular or cellular analysis] is going to be more effective in cases like Natalie’s.”
Natalie is active in her church and in Girl Scouts, and she’s a dedicated student at John Adams High School in South Bend. Quiet and thoughtful, she advocates locally and nationally for better healthcare coverage. After meeting with Department of Justice representatives in Indiana, Natalie went to Washington DC last summer and presented a letter she’d written on the topic at a DOJ brown-bag lunch, interacting comfortably with civil rights attorneys and staff.
“I’m really proud that she’s learned to have her own voice,” Melody says of her daughter. “Her doctors have encouraged that. It’s laying the foundation for other people to not have such a hard time.” Dr. Hainline adds of his ambitious patient, “She has taken what life has given her, and with support from her parents and from Riley, she’s succeeded.”