Patient Spotlight: Jake Gordon

Story by Karen Gordon

Running a marathon is not an easy task for anyone. Running a marathon with GSD is something else entirely. When my son Jake first began to exercise in middle school, his sugars would constantly drop to dangerously low levels. Making it just one lap around the school track was a difficult task, with rescue measures put in place to bring his sugar level back to stable numbers. But Jake was determined to make this work. Through hard work, determination, and communication with his care team, he turned himself into an accomplished runner. At last, in 2021, Jake achieved his lofty goals and ran the Kentucky Derby Marathon in Louisville, KY, this time with his college best friend running beside him. He ran the 26.2 miles while carrying a hefty backpack filled with all his medical supplies.

Fast forward to November 2023 and Jake was all but set to run the TCS New York City Marathon solo. However, two days before the race, everything came to a halt. It came to our attention that running backpacks would not be allowed under any circumstance, regardless of a medical issue, due to security reasons. As is typical with GSD, my husband and I were helping Jake scramble to put a new plan in place so he could still run. The three of us spent two days handling countless phone calls and emails. Eventually, Jake made contact with the NYC marathon medical director and managed to have cornstarch placed in medical tents ahead of time. The tents were picked according to Jake’s cornstarch schedule and approximate pacing.

On race day, in lieu of a running backpack, Jake was allowed to wear a hydration vest and fanny pack filled with cornstarch in ziploc type bags - a method he’s never used and would be testing on race day. Throughout the race there were thousands of people surrounding him and running the race as well; however, it does not provide the same comfort as running with a close friend - someone who knows the daily intricacies of GSD. On top of Jake’s regular GSD schedule of cornstarch doses every 3- 4 hours, he added an additional 5 grams of cornstarch per mile (taken as 30g every 6 miles) and a 1/2 pack of smarties every mile to keep his blood sugar from dropping. He also snacked on salty pretzels throughout the race to help balance blood sugar and electrolytes.

In spite of all the obstacles, Jake finished the Marathon in 4:34 (a new personal record for him) with family, friends and thousands of others cheering him on. Watching Jake run the NYC marathon was an experience we will always cherish. In the face of adversity, Jake has exemplified true resilience and determination to meet his goals. This remarkable journey serves as a reminder of all the amazing things someone with Glycogen Storage Disease can do.


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" ... because every child deserves to be healthy."

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