SALT LAKE CITY — Edgar Perez has spent every night for almost a year at the Ronald McDonald House.
It is his home away from home for the time being, as it has been off and on for the last 14 years — and now, for the unforeseeable future.
"I'm living the dream," the 19-year-old with cerebral palsy and idiopathic thrombocytopenic purpura, a chronic blood disorder, said Wednesday. "It's a blessing for me to get this kind of treatment."
His smile doesn't lie. If he was living at home in Mexico City, he wouldn't have access to the weekly blood infusions, clinical expertise and immune therapy his body requires to stay healthy. Doctors there have said as much.
So, Perez is more than OK with staying at "such a nice place."
"I am very happy here," he said. "I make it a point to enjoy the simple things in life."
He and his parents and two younger siblings are staying in a room at the local Ronald McDonald House and the children attend local schools. Perez graduated last year from Viewmont High School.
He was born with cerebral palsy and first came to Salt Lake City for medical care when he was 5 years old. A missionary for The Church of Jesus Christ of Latter-day Saints, who was living with his family in Mexico at the time, had mentioned a connection to the local Shriners Hospitals for Children and Perez has been seeing doctors there ever since.
From the Ronald McDonald House, located at 935 E. South Temple, Perez is shuttled back and forth to Shriners for physical and occupational therapy, as well as leg brace and wheelchair adjustments; and, to Huntsman Cancer Institute, where he receives infusions for his blood disorder, which has landed him in the emergency room three times. Doctors, he said, are still trying to understand it.
Perez is one of up to 72 patients and their families who can stay at the Ronald McDonald House any given day as they receive medical care not available near their own homes. The organization, which provides families with access to housing, transportation and food, as well as activities and other necessities, has been running at 95 percent capacity for more than a year.
To use the Ronald McDonald House, patients must live at least 35 miles away, which makes it more difficult to go back and forth between various treatments at area hospitals. The organization believes patients cope better having family around near, so, it exists to ease daily burdens for those families.
Perez has missed Mexico, but has made Ronald McDonald House his home.
He is different from other patients; he makes it a point to focus on others.
"He's like a ray of sunshine around here," said Carrie Romano, CEO at Ronald McDonald House Charities in Salt Lake City. "He welcomes new people, which is why we call him the 'mayor' around here. He is always helping the staff."
On Wednesday, Perez was named honorary mayor of the Ronald McDonald House, with a surprise visit and special recognition from Salt Lake City Mayor Jackie Biskupski, who thanked him "for running the Ronald McDonald House so well."
"The people here think highly of you and the difference you make on people's lives," Biskupski told Perez after presenting him with an official key to the city.
"It's an honor," Perez said. "It means a lot to me to be reached out to by a person of that importance."
The sentiment brought tears to Biskupski's eyes. She gave him a "golden ticket" to enjoy sky-diving (which his doctors miraculously approved of) and a night at a Salt Lake Bees baseball game on May 10. Both are local experiences selected by Perez as part of being nominated as a recipient of the Ronald McDonald House Grandparent Fund, established in 2015. The recognition aims to give memorable experiences to children with life-altering or life-limiting conditions.
Though Perez doesn't let his limits define him. His happiness and zest for life is almost contagious. He knows everyone at the house by name.
Perez said that even though his life has been hard, with medical complications related to his conditions still coming to light, "I have good desires of continuing on with my plans" — those plans include serving a mission for The Church of Jesus Christ of Latter-day Saints.
Despite setbacks and ongoing concerns, Perez said he will serve, even if he ends up "fixing computers for the church" at its headquarters in Salt Lake City, which would actually be his dream.Comment on this story
The young man said he relies a lot on his faith in Jesus Christ, and the direction he believes the Lord laid out for him, to "be the hands to the Lord," he said. Aside from serving a mission, Perez would love to attend college in Utah and study computer science.
In his spare time, he writes code and enjoys developing and working on various computer programs. Biskupski promised to write him a letter of recommendation, but strongly encouraged him to attend the University of Utah over his dream of attending BYU.