What does daily care look like for a child with NKH?

Drake and Vivian are both nonverbal and depend on others for nearly everything. Their days revolve around a schedule that rarely changes: feedings through a G-tube, medications given on the clock, and breathing care that includes suction and a vest that helps clear their lungs. At night, both children are connected to oxygen monitors, and medications continue late into the evening.

The family manages much of what used to require hospital visits at home, including home oxygen and even some lab draws. Tarah has kept journals since Drake was born to track seizures, symptoms, and responses to treatments.

Tarah and Eric share the load. They split work and home days each week so each can work and care for the children, and Eric has long taken the night shift. In 2026, that night shift has been especially hard as Vivian has had months of difficult nights.

Still, daily life isn't only care. It's siblings reading stories, birthday parties, and small victories, like Drake learning to use an eye-gaze device to communicate.

The gene therapy trial is the family's hope for changing what daily life looks like. Help fund it, or see other ways to support a family like theirs.

Sources: Saving Drake and Vivian (GoFundMe updates)