Quentin's story

A rare disease treated close to home

Three in one million. Those were the chances that 2-year-old Quentin’s face rash and weak muscles were an autoimmune disease known as juvenile dermatomyositis, or JDM.
 
But Quentin didn’t have the rash around his eyes, a telltale sign of JDM. Plus, because Quentin, who was born prematurely, had a few other health issues and had previously had surgery for an unrelated issue, doctors didn’t immediately diagnose the rare disorder.
 
So, Patty and her husband, Mark, spent two years searching for the “why” to Quentin’s issues. Because of his weakness, Quentin was unable to run without falling down, and if he was sitting on the floor, he needed help getting up. He developed calcinosis, calcium deposits underneath his skin. Those deposits grew and eventually broke through the surface, leaving open sores on his hips and legs. Then, as he neared age four, a dermatologist officially diagnosed him with JDM.
 
Known to family, friends and hospital staff as “Q,” Quentin began treatment at HSHS St. Vincent Children’s Hospital by receiving steroid infusions every four days. Each infusion took about three hours. As the JDM responded to treatment, he received infusions once a month and also began receiving intravenous immunoglobulin (IVIG) infusions which took eight to nine hours each.
 
“If we’d have had to travel to Milwaukee or Chicago that often, it would have been really overwhelming,” Patty said. “It has been so convenient being close to home and has allowed us to keep life as normal as possible.”
 
Q is familiar with most, if not all, of the staff at  HSHS St. Vincent Children’s Hospital as well as Prevea Pediatric Intensivists, Dr. Joel Ament, Dr. John Taylor and Dr. Ralph Vardis who take care of him. The nurses, the Child Life staff and even the women who work at the Admissions desk, have also played a positive role in Q’s treatment.

“It could have been really scary, but it never was because they made it fun,” Patty said.