Riley Desin will be visiting Shriners Hospitals for Children all around the country in the next 12 months, but it won’t be for medical assistance.
The Winter Garden teenager has been selected as one of two patients to represent the hospital system as a national ambassador. There are 22 hospitals in the United States, Mexico and Canada, and Riley said his family’s goal is to visit every one of them.
“My role is to be traveling the country representing Shriners Hospitals for Children and Shriners International and … bringing awareness to the hospital on the national level,” he said.
The representatives will spend the year sharing their stories of perseverance in the face of adversity and the ways Shriners Hospitals for Children have made a dramatic, life-changing difference in their lives.
He will be a face to the mission, his mother, Tina Desin, said.
And he will do all this while tackling his senior year of high school at Foundation Academy.
In addition to the hospital visits, Riley had to commit to attending four national events: a PGA tournament in Las Vegas in November; the Rose Bowl Parade in Pasadena, California, and a college all-star football game in St. Petersburg in January; and a college baseball tournament in Houston in March.
The family plans to tour the West Coast hospitals while they are in California for Riley’s participation in the Rose Bowl Parade. They will spend Thanksgiving break on the East Coast and spring break in the Midwest.
He is scheduled to speak at Shriners centers in Atlanta and Tallahassee next month. Additional speaking engagements could arise during the year, too.
Prior to Riley’s selection as a national patient ambassador, a film crew visited his school, workplace and home to document his life. He learned in January that he was named a national ambassador, but the official announcement was made at the national convention last month. He and the other teen ambassador addressed the Shriners in attendance.
“Going into it, I had a feeling I would be chosen,” Riley said. “It’s something I’ve wanted for the last few years.”
HELP FOR FAMILIES
Shriners Hospitals provide medical care for children with orthopedic issues, burns, cleft lips and palates and spinal cord injury, regardless of the family’s ability to pay.
Riley was born with a genetic condition called Hereditary Multiple Exostoses, which causes irregular bone growth. The exostoses are commonly known as bone spurs, and they were discovered from head to toe during a full-body X-ray when Riley was 15 months old.
The disorder causes joint and mobility issues. He has had more than a dozen surgeries — several to lengthen the ulna in his left arm and many to straighten his legs. Other surgeries have been done because the spurs were causing pain or making it difficult for him to move.
“It’s like cartilage-capped bones,” Tina Desin said. “They grow lumpy.”
Riley has served as a local patient ambassador for a few years at Shriners Hospitals’ Tampa location, where he continues to receive checkups twice a year. Doctors don’t intervene unless the growths are causing an issue.
“From what the doctors say and think, once I stop growing, the growths should stop growing, as well,” he said.
THE JOURNEY CONTINUES
Riley, 17, and the other seniors at Foundation Academy painted their parking spaces a few weeks ago in anticipation of the new school year. He stays busy with school, attending classes, participating in clubs and volunteering.
Last year, he was basketball manager and spent a great deal of time with the team and going to practices. He’s a member of National Honor Society and Christians In Service and does volunteer work through the school.
Despite his struggles and despite missing 19 days of school last year for medical reasons, Riley is a straight-A student.
His plan is to attend Valencia College and then the University of Central Florida. He would like to work for Shriners Hospitals, possibly in the public-relations department. He wants to join Shriners International someday.
One of the best things to happen to him, he said, has been the chance to spend time with a young boy from the Daytona area who has the same rare condition. The boy’s mother said meeting Riley has given the family hope.
Riley knows his journey isn’t through yet, because there’s always the possibility of more growths and more surgeries. But the condition has given him a new perspective on life.
“This disorder isn’t a crutch, it isn’t an excuse,” Riley said. “It’s a reminder of all of the amazing people I have met.”
Community Editor Amy Quesinberry was born at the old West Orange Memorial Hospital and raised in Winter Garden. Aside from earning her journalism degree from the University of Georgia, she hasn’t strayed too far from her hometown and her three-mile bubble. She grew up reading The Winter Garden Times and knew in the eighth grade she wanted to write for her community newspaper. She has been part of the writing and editing team since 1990.