When he was three years old, Caleb was diagnosed by a CHOC genetic specialist with what’s known as MPS II. This extremely rare and devastating genetic disease affects nearly every organ in the body, along with the joints and spine.
“Within a few days,” his dad, Rory, recalls, “we were in CHOC’s metabolic clinic and meeting Dr. Raymond Wang, a metabolic disorders specialist. When we walked into the patient room, we weren’t just another number. We had all these experts in one room, but they also had really big hearts.”
Over the past 13 years, the family has formed a special bond with Dr. Wang and each of the many doctors on Caleb’s care team.
Caleb has had numerous procedures at CHOC, including hernia repair, adenoids and tonsils removal, two double-knee surgeries and, most recently, double abdominal surgery. There have also been many MRIs, ultrasounds, appointments and physical therapy sessions. Caleb stresses how our devoted doctors and nurses are “very compassionate and understanding, whatever the situation.”
Nothing should put childhood on pause
In these uncertain times, children’s hospital donations are more important than ever. As a non-profit hospital, CHOC treats over 150,000 children annually, regardless of their ability to pay.
Persevering through the ups and downs
Despite his many health challenges—and enduring a four-hour infusion treatment every week—Caleb’s determined to live his best life possible. His mom Marie confides, “Suffering produced his character. When I think of Caleb today, I think of strength and courage.”
For example, an avid runner since he was seven, this high school junior didn’t let his double-knee surgeries keep him down. His resilience has shined through. Amazingly, he currently competes on his high school’s track and field team. Just as amazing is the deeply appreciated commitment Caleb and his family are making to CHOC’s lifesaving work.
“For all that we had been blessed with by CHOC, we wanted to give back and help support other families.”—Marie, Caleb’s mom
From 2014 to 2019, they participated in CHOC Walk in the Park. In the following two years, Caleb ran over 100 miles each year to raise funds for CHOC. In 2022, through his Caleb’s Courageous Run campaign on CHOC Raise Up, he ran over 100 miles yet again. In all, Caleb and his family’s efforts have raised over $27,000 to support the hospital.
Rory explains, “As a patient, you’re on the receiving end. We wanted to be on the giving end. We give back because we want Caleb to be a part of helping to find a cure and helping other families.”
Caleb, who plans to attend college and study American History, says, “I just feel like I wanted to do something to give back to CHOC and help them in what they’re pursuing for children like me who are in the very difficult situation of fighting a rare disease.”
This story appeared in the January 2023 print issue of the CHOC Chronicle newsletter.