Sixteen-year-old Coram patient, Andrew, is a particularly busy and active kid. Along with carrying a heavy high school course load, he’s a member of his varsity crew team, cycles and goes running in his spare time.
Andrew also has Type 1 Gaucher's Disease, a rare disorder that means his body has trouble breaking down a fatty chemical called glucocerebroside and requires him to undergo infusion therapy every two weeks. Clearly, however, Andrew has never let his condition slow him down.
An athlete and adventurer, earlier this year he applied to go on a cross-country bike trip with the teen summer program, Overland. After he was accepted to go on the expedition, Andrew and his mom, Heidi, knew they had to start preparing right away. A grueling, six-week trip, Overland's American Challenge ride requires intensive training and organization for all participants. Add to that Andrew's condition and infusion schedule, and planning the trip became an imposing endeavor of its own.
While Andrew built up strength and stamina on his bike, his mom set to work on the treatment plan for his trip. During his journey, Andrew would need at least two infusions of his medication, which is normally administered by a Coram nurse at his home in Massachusetts. Aware that their services are available nationwide, Heidi got in touch with the Coram main office to arrange her son's on-the-road treatment. From there, the coordination project began. Heidi connected Coram representatives with trip leaders from Overland, Andrew's doctor, and health insurance manager.
It was eventually determined that Andrew would be able to receive his infusions in Oklahoma and California. The nature of the bike trip, however, meant that it was impossible to tell exactly where in those states Andrew would be until just a few days before treatment.
The Oklahoma infusion was particularly tricky. The state requires that an in-state doctor sign off on any medication order for a minor, and that a guardian be present when treatment is administered. That unexpected wrinkle meant that Heidi had to fly across the country and drive across the state. The trip wasn’t straightforward, but Heidi was able to join her son for his appointment with the doctor and subsequent infusion. Heidi credits Coram’s national presence and impressive flexibility for allowing Andrew to ultimately receive infusions in hotel rooms in Oklahoma City, OK and Santa Monica, CA. “[Coram] really advocated for him. I cannot emphasize that enough. They never stopped. They never said no.”
It's now been a few months since Andrew completed his cross-country ride. Both of his infusion treatments went smoothly and he’s grateful to everyone who helped to make his epic summer a reality. “I have this condition, but because of the medication and the many people who’ve helped me, I’ve been able to live a completely full life.” Andrew and Heidi agree that the experience with Overland and Coram has opened their eyes to future adventures and opportunities. “There are really no limitations,” says Heidi. The possibilities on the horizon for Andrew, now a junior in high school, certainly appear to be limitless.