Gina Zanik took a stance in the days leading up to her husband’s 49th birthday cake and his trip to Honolulu for the start of training camp. She pledged that her husband, Justin, the general manager of the Utah Jazz, would not wait another eight hours to schedule a physical examination with the team physician. Justin had gone eight years without one.
She told him he looked tired, thinner. The long gap in physicals felt like an anvil hanging over them. Justin countered with what he always did: There were the late-summer scouting trips to Japan, the Philippines and Australia; the trades; the games; the endless NBA front office calendar.
“Why wouldn’t I look a little tired?” he responded.
Gina had been on him for years to get the physical, but this felt different. Justin knew the steely look in Gina’s gaze — and knew his resistance was futile. For 15 years, he has witnessed her fighting for her family’s health and lives.
Gina is the co-founder and executive director of the Rare and Undiagnosed Network (RUN), an advocacy group with a mission has been both harrowing and heroic. Gina has advocated to everyone from hospital administrators to insurance providers to legislatures for children like their own — Ava (16), Oskar (14) and Lucy (12) — who live with unanswered questions and torturous symptoms from autonomic neuropathy.
The condition is borne of nerve damage that affects automatic body functions like temperature control, blood pressure and digestion. Neither Gina — who contracted it giving birth to Ava in 2007 — nor the kids have any treatments. There’s no possibility of a cure. Sleep is the only thing that they’ve ever found that helps on this endless diagnostic odyssey.
Gina has spent the entirety of motherhood pursuing complex medical questions that have no answers, and yet her husband had been too stubborn to get some answers of his own.
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