Terrell Starks held fiercely to life until the end, savoring his last moments with family as sickle cell disease took its final toll.

Terrell passed away this morning, just a few days after his 24th birthday and just five years after his sister, Dominique, lost her life to the same inherited blood disorder. Sickle cell disease kills and disables African Americans by the thousands and currently affects more than 1,700 people in Kentucky and Indiana.

Terrell and his parents, Carl and Valicia, wanted to share their story with the community to raise awareness of the heartbreaking toll of the disease. Their story achieved that purpose, and ultimately revealed more about living than dying – how to push through pain for the joy life gives, fill each moment to the brim and cherish family.

In his last week, Terrell spent every moment with his parents, his older brother Cortez and other family and friends who came from Michigan and elsewhere. They gathered in the bedroom that had become his world, talking to him and telling him they loved him whenever he woke from a fitful sleep marked by shaking, spasms and fever. Days before his death, he was able to watch "The Blind Side" with his family, see roses the hospice team sent for his birthday and take a few bites of food.

Many times over those days, I heard him tell Valicia and Carl that he loved them.

Pain was a constant in his life, since childhood, and he always persisted through it. Even when it became excruciating, he resisted taking too much sedating pain medication so that he could be present for his family.

Now, finally, his pain is over.

(Photo: Terrell Starks, left, clings to life last week as his mom Valicia looks on and his dad Carl, right, caresses his hand at their Shively home. Terrell suffers from sickle cell disease and his condition has been deteriorating for months. By Sam Upshaw Jr., The Courier-Journal, May 20, 2010)

We are very sad to share a message Terrell Starks' father sent us at 5:06 a.m. Tuesday: "Terrell lost his long battle with sickle cell disease 4:55 this morning."

Terrell, who just turned 24, had been suffering with the inherited blood disorder since birth.

Terrell Starks had another rough night on Saturday, and his mother Valicia said the breaks in his breathing were happening more often on Sunday.

I reached Valicia by phone, and she was just lying down for a little sleep Sunday afternoon. She and her husband Carl have gotten very little sleep in recent days as sickle cell disease takes its final toll on their son.

I witnessed the breathing problems earlier this week. Terrell would take shallow, quick breaths, then stop breathing for many seconds before catching his breath again. Valicia said she once counted almost a minute without a breath.

Terrell sleeps often, but sleep does not bring peace. His organs are shutting down, and his oversized heart beats so fast it shakes his whole body. He's also experiencing frequent spasms that cause his body to jerk as he sleeps.

Several family members and friends have been stopping by the Starks' Shively home in recent days to bring food and prayers and lend support through this most difficult of times.

When I saw Terrell on Saturday, he seemed happy to be surrounded by so much love.

It reminded me that love can transcend even the worst pain.

After a difficult night on Friday, Terrell Starks was able to stay awake long enough on Saturday afternoon to watch the movie "The Blind Side" with his family from his bed.

He was able to talk with them, and to express hope that he would feel better as he lives through the final stages of sickle cell disease. And I got to clasp his hand in mine, and know that he realized I was there.

This brief reprieve came after a night when his body was wracked by spasms thought to be caused by his medications combined with his organs gradually shutting down. "Honestly, I didn't think he would make it through the night," his mother Valicia said.

On Wednesday, his father Carl said, doctors and nurses gave him two days to live at most. "Now," he said, "we're at Saturday."

But though he seems better than last night, Carl can't help recalling how much better he looked weeks and months ago, when he could walk around the house, eat full meals and carry on long conversations with them.

"That's the disease progression at its utmost," Carl said. "It has gone full circle."

Terrell Sparks turned in his bed Friday to look at two pink roses.

"Happy birthday from the hospice team," read the card.

Terrell turned 24 as sickle cell disease continued taking its final toll on his body. Despite high doses of painkillers, he was still suffering. Every once in a while, his body made jerking motions that a Hosparus nurse said might be related to his many medications. Sweat covered his face as his temperature spiked to 101.2 degrees.

"Terrell," his mother Valicia said, leaning close to his ear, "Mama's gonna give you some liquid Tylenol. You've got another fever."

The family's miniature dachshund, Ozzy, cried to get up in bed with Terrell and snuggle with him like they used to. But Valicia and Carl won't let the dog do that anymore. So family friend Donna Morrissette lifted Ozzy up and held him in her lap so he could see his buddy. The dog immediately stopped crying and just watched Terrell protectively.

"Oh my baby..." Valicia murmured.

Later, Carl caressed his son's arm.

"I try to be a pillar of strength for my family, but I only got so much," he said. "For him to still be here, all I see is his determination to live."

Valicia said she knows he doesn't have much time in this world, and she wants him to go in peace.

"If he could leave this world without feeling any pain," she said to the nurse, "that would be beautiful."

(Photo by Sam Upshaw, Jr.)

Valicia Starks leaned over her son, kissed him four times and held his hand to her cheek as he continued clinging to life on Thursday.

Terrell Starks -- whose 24th birthday is Friday -- now sleeps almost all the time. His football-sized heart beats so fast he shakes. His quick breathing is filled with gurgles and squeaks. Sickle cell disease is taking its final toll.

The hospice nurses have increased Terrell's pain medications significantly to keep him as comfortable as possible, yet he still feels pain so severe it makes him wince.

"I never thought it would come to this; I didn't," Valicia said, referring to pain breaking through all attempts to ease it.

Carolyn Cappiello, a nurse with Hosparus, said children and young adults have strong bodies that want to fight, and pain medications often don't work the same way on them that they do on older people. Plus, she said, she could tell Terrell's spirit is fighting as strong as his body.

"He's a very strong young man. He's a tough, tough kid," Cappiello told his parents. "You raised a good boy."

At one point, Terrell's father, Carl, sat down next to his son and stroked his head. Terrell had a rare lucid moment, asking him, in a weak voice, what he ate for breakfast.

When Terrell drifted back to sleep, Valicia confided to Carl: "That's his problem. He's worried about you and me."

Valicia said she doesn't want Terrell to worry; she just wants him to feel less pain. And she wants him to know she will be with him until the end.

As she curled near his pillow, she put her hand on his face and told him: "I'm right here, Rell, OK?"

And as she administered yet another dose of pain medicine, she said she loved him.

Eyes closed, Terrell mustered enough strength to reply:

"I love you, too."

(Photo by Sam Upshaw, Jr.)

Terrell's oversized heart is racing now; his breathing sounds like gurgles and sometimes briefly stops.

His doctors and nurses have told his parents that Terrell's vital signs indicate he may be a day or so from death. They say his life may end in a massive heart attack, and they plan to increase his medication so he doesn't feel as much pain if that happens.

Valicia and Carl have called their son Cortez home from Michigan; they were waiting for his plane to arrive in Louisville this afternoon.

As they waited, they sat with Terrell on his bed, where he lay bare-chested, weak and feverish, under a thin sheet. Valicia held his hand and placed it on her cheek, then just held it there as Carl watched from a nearby recliner.

On the bedside table was a bible the family has been reading from. During the few minutes Terrell was awake today, Valicia had read to him from Isaiah, Chapter 41: "Do not be afraid, for I am with you. Do not gaze about, for I am your God. I will fortify you... I will really keep fast hold of you with my right hand of righteousness.....Do not be afraid. I myself will help you."

A friend soon joined the family in Terrell's room, and a hospice nurse eventually arrived to give them the specifics about increasing his pain medications. Her words seemed to echo from a deep silence that had fallen over the room.

Those words punctuated Valicia's pain. She burst into tears, got up from Terrell's bed and clung to her husband, burying her face in his chest as he held her close.

(Photo by Sam Upshaw, Jr.)