Cortez Starks is Valicia and Carl's only child who doesn't have sickle cell disease. He grew up watching his sister Dominique get sicker and sicker until she died. And now, he's losing his younger brother Terrell.

Though he lives out of state, Cortez checks in daily with his family by phone -- often more than once a day. They talk about the minutae of life, like what they ate for breakfast, lunch and dinner and what they did that day. They laugh about memories. They stay close and connected.

Sam and I listened in on a call. The family sat around the den and took turns speaking to Cortez on the speaker phone. Often, that's what they do; the phone sits in the middle of the room like Cortez is in there with everybody else.

After they talked about their days, I interviewed Cortez, first asking him about how he copes with his brother's impending death when he's not living with the family.

"It is rough. Some days are worse than the others," he said, adding that he thinks about Terrell all the time."I always wanted my brother to be my roommate."

"Me, too," Terrell chimed in.

Cortez called Terrell "probably the strongest person I know."

But the family's journey has made Cortez strong, too.

When Cortez was a teenager, he was the only one strong enough for athletics. Every time he played -- every time he won -- it was a victory for Terrell and Dominique as well as himself. He was carrying the dreams of all three children.

In many ways, I thought, he still is.

Republic Bank & Trust has set up a fund on behalf of the Starks family for those who would like to donate.

They did this after several people who read the family's story on Sunday asked where to send donations to help them.

Terrell Starks, 23, is dying of sickle cell disease, the same inherited blood disorder that took his sister Dominique's life at 17.

People can drop off donations at any Republic Bank location in Louisville or send checks to:

T & D Starks Foundation
Republic Bank & Trust
c/o Cory Bybee
11330 Main Street
Louisville, KY 40243

The "T & D" stands for Terrell and Dominique. The attached photo of the siblings was taken in 2004, the year before Dominique's death.

Talking with Terrell and Carl in their den yesterday, I thought of the old Crosby, Stills, Nash and Young song "Teach Your Children."

The song describes parents teaching children and children teaching parents. Terrell and Carl say they haven't just learned from each other; they've each been shaped by the other.

"I have learned how to be content from them," Carl said, referring to Terrell and his late daughter Dominique. "I learned how to make the best of my surroundings from them."

Before he learned that lesson, Carl, like many Americans, said he was always striving for better -- constantly trying to be the best at work and to have more material things. "I was never satisfied," he said. "I always wanted more."

He'd also complain about little things.

"My kids never complained. Not one day," despite living with sometimes-debilitating pain, he said. "Now I say: What would my kids do with this?"

Terrell, for his part, said he's learned from Carl "how to be a man for the family, to be a head of a household, how to keep things together even if things are difficult."

And Terrell has learned from both of his parents how to speak up for himself in medical settings -- to be an advocate for himself and make his own decisions.

Terrell said he's not bitter about his disease or his impending death.

"These are just the cards I was dealt, so I'll play the hand the best I can," he told me.

Carl said such words are the essence of the lesson his son is teaching him.

"To be dealt that hand and to have this outlook, it's amazing," he said. It's just amazing."

Terrell and his parents are planning one last family trip.

Terrell can't travel far or get around much, but he wants to get out of his bedroom and into the world, if only for a while.

His sister, Dominique, also took a trip with the family shortly before she died. They went to Great Wolf Lodge in Michigan, the state where they lived at the time. Terrell says he doesn't want to go there, partly because it's full of too many memories of her.

So on a recent day, Carl sat down on Terrell's bed and they studied possibilities on a laptop computer. They explored the Web site for Kentucky state parks and came upon General Butler State Resort Park in Carrollton, Ky. It's close enough that travel wouldn't be a big problem and far enough away that it would give Terrell a taste of nature. It includes a campground, a historic house, cottages and a lodge. Although Terrell wouldn't be able to hike or even walk much, he could look outside at the trees, take in views of the Ohio River valley and perhaps have a restaurant meal with his parents.

Carl and Terrell talked about leaving on the first Sunday in March and staying for a couple of days. They didn't want to plan too far in the future, but just far enough that Terrell's brother can make it, too.

"You know my schedule's clear," Terrell joked, as he sometimes does to lighten the mood.

Then he scrolled through the Web site and smiled.

Valicia and Carl Starks told Sam and I that one of the reasons they wanted to share their story was to let the world know about the impact of sickle cell disease. They also said they hoped their story could help others by providing some insight and perhaps saving another family grief and pain.

An e-mail sent to me after the story ran Sunday showed that the family's story struck a chord in the community, just as they hoped it would. Helen Harrah of Mt. Washington wrote (and I share with her permission):

I just finished reading the articles about sickle cell anemia in the Courier this morning. What an awesome job! I sat with tears streaming down my face as I read them and realized I never knew much of anything about this horrible disease. You opened my eyes to this and I appreciate it. I hope you win some type of literary award for this group of articles but if not, you have made many of us understand what families facing this go through each day. For this, I thank you. Congratulations and I look forward to more of the same.

Although I'm grateful for Helen's praise, I think the credit belongs with the Starks family for bravely sharing what they are going through at one of the most painful times in their lives.

Other readers have also contacted me, a few to offer donations. One reader, for example, said she wanted to give something to help pay for a headstone for Carl and Valicia's daughter Dominique, who died at 17 from the same disease that is now taking her brother Terrell's life. Valicia said she'd like to set up some sort of foundation or fund, but she hasn't yet established one.

As for me, seeing such an outpouring of empathy from the community I call home reminds me that I chose a good and caring place to raise my two children.

Spending time with sickle cell disease patient Terrell Starks, 23, has given me a whole new perspective on life. Juggling home life, work and obligations to friends and family can be a hassle at times, but the soft spoken words from a young man who has been forced to reach a level of maturity before his peers compels me to rethink my trivial concerns.

Sickle cell disease affects thousands, but many Americans don't know much about the inherited blood disorder.

I thought I'd share a few places on the Web where you can learn more:

Sickle Cell Disease Association of America
American Sickle Cell Anemia Association
U.S. Centers for Disease Control and Prevention sickle cell page
National Heart, Lung and Blood Institute sickle cell information
The Sickle Cell Information Center
Medline Plus sickle cell information

Terrell Starks says he’d rather suffer the often-excruciating pain of sickle cell disease than take more painkillers that would sedate him. “They just make you sleep all day,” he tells me as he sits up in his bed. “It’s just not a good feeling. You’re there – like your body’s there – but you’re not.”

Terrell, who is dying at 23 years old, wants to be fully present in his final days, savoring every morsel of life he still can.

He wants to spend time with his parents, Valicia and Carl, doing things he can still do, like assembling puzzles and planting tomato and collard-green seeds in cups in anticipation of a spring garden. He wants to be able to think about things. While he watches Rachael Ray’s cooking show on television, for example, he tells me that he imagines what it would be like to start a bakery or a restaurant – something he’s always wanted to do. Before sickle cell disease began taking his final toll, Terrell was enrolled in culinary classes and baking elaborate cakes for relatives and friends.

Today, his bedroom has become his whole world at a time when his peers are branching out and making their way as young adults. An oxygen tube snakes from his nose, leading to a machine in the family’s living room that hums with each mechanical breath. Carl and Valicia spend much of their time in their son’s bedroom, eating meals with him, snuggling with him on the bed, watching television and joking over memories. At times, when Terrell can muster enough energy, he walks into another room. But often just the walking takes so much out of him that he puts his head on his mother’s lap and goes to sleep. Sometimes, his pain is so intense that it radiates throughout his body and forces him to curl up in a fetal position.

Valicia shares Terrell’s opinions about sedating medication. When a hospice nurse recently mentioned Terrell might benefit from painkillers that could make him sleepier, she resisted the idea. Like him, she wants to squeeze out every last moment with her son, just as she did with her daughter Dominique, who died of sickle cell five years ago at age 17. At the end of her life, even her mother’s touch was too painful to endure.

In the past few weeks, photographer Sam Upshaw and I have visited the Starks family several times, and we plan to follow them through Terrell’s death.

Editors and others have asked what it feels like to be in their home: Is it depressing? I tell them it’s not. In many ways, it is full of life. Their love for each other is palpable; I see it in the gentleness with which the parents administer medications and in the way Terrell tenderly holds his mother’s hand while she speaks to me. They know each other completely; they often finish each other’s sentences. They all say they try not to dwell on what lies ahead, or what could have been. They just treasure what they have now, as a family.

I wonder, as I watch them, whether I would choose a full but horribly painful life over sedating painkillers. I’d like to think I would. I admire Terrell’s mature perspective, a perspective he’s had to develop far too early in life. I get the feeling that spending time with him and his family will teach me more about living than dying.