"I don't want people to look at our story as a tragedy"

When I visited the Starks family this past weekend, Valicia told me she doesn't want people to read her family's story and feel sad or sorry for them.

Instead, she wants them to learn from her family's experiences -- about sickle cell disease and about making the most of "a horrible situation."

"I don't want people to look at our story as a tragedy," she said. In many ways, she said, it's about adapting to anything and somehow finding joy -- a lesson her children have taught her many times over.

Although some readers have said they were saddened by the family's story, almost everyone has told me they were also inspired by the way the family is coping, finding strength and drawing close every day.

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Terrell Starks
Living In The Moment

Like his sister, Dominique, before him, 23-year-old Terrell Starks is succumbing to sickle cell disease, an inherited blood disorder that disproportionately strikes African Americans.

Laura Ungar has been the Courier-Journal's medical writer since 2004. Major projects have examined Kentucky's poor health, black lung disease, cervical cancer in India and the health insurance crisis among America's middle class. You can follow her series on medical breakthroughs and read more from Laura on the HealthBytes blog. Through this project, she hopes to learn and share lessons about living life fully -- even through its final chapter.

Sam Upshaw, 46, of Louisville, has been a photographer with The Courier-Journal for 22 years. In addition to covering the community on a daily basis, he has visually documented Muhammad Ali, Kentucky's poor health, the University of Louisville's win at the Orange Bowl in Miami and Hurricane Ivan in Florida. Spending time with Terrell, he is inspired by the young man's strength and wisdom, which helps put life's little inconveniences in perspective.