St. Jude Children's Research Hospital

by St. Jude Children's Research Hospital

Since 2008, Caleb has been a familiar sight at the FedEx St. Jude Classic. Caleb is a high-spirited, inquisitive 13-year-old. Once you meet Caleb, you won’t soon forget him. Whether he’s telling jokes, asking questions a mile a minute or cheering on his favorite golfers at the tournament, Caleb makes quite the impression.

But for the first year of his life, Caleb’s personality was dormant. He was in and out of the hospital often. He developed hearing problems and his feet turned inward, but doctors couldn’t pinpoint what was wrong. One of Caleb’s doctors referred his parents, Kelly and Ray, to a geneticist. There, tests revealed 13-month-old Caleb suffered from Hurler’s syndrome, a rare genetic disease for which there is no cure.

Caleb’s geneticist referred him to St. Jude Children’s Research Hospital, where he became the third child to be treated for Hurler’s syndrome at the hospital. Caleb’s treatment has included chemotherapy, radiation therapy and a bone marrow transplant. He has also had back surgery and carpal tunnel surgery on his hands. Last summer, Caleb underwent surgery to have both of his hips reconstructed.

But despite everything Caleb has been through in his life, he’s thriving. “He doesn’t let anything get him down,” said Kelly.

Caleb and his dad have developed a love of golf. Caleb has his own set of clubs and likes hitting golf balls at a local golf course with Ray. The whole family looks forward to the FedEx St. Jude Classic each June. Caleb’s favorite part of tournament week is Wednesday’s Little Loopers event, when St. Jude patients serve as honorary caddies at the 11th hole.

“Caleb loves being right in the center of things,” said Kelly with a laugh. Over the years, Caleb has had an opportunity to meet some of his favorite golfers at the tournament, including Ben Crane, Phil Mickelson and Camilo Villegas.

It means a lot to Kelly and Ray that so many players take the time to visit with patients and their families at the tournament. “When we attend events like this, it’s a chance for us to take a moment away from our lives and have fun,” Kelly said. “Watching Caleb enjoying himself means the world to us. It’s a chance for him to forget about the pain he experiences on a daily basis. He can just have fun and be a kid.”

Thanks to generous donors, families like Caleb's never receive a bill from St. Jude for treatment, travel, housing or food — because all a family should worry about is helping their child live.