Richmond family shares their sickle cell story of love and loss

Posted at 9:39 AM, Mar 31, 2023

RICHMOND, Va. -- Sickle cell disease is an inherited blood disease that impacts more than 100,000 Americans. There is no cure for the disease and median life expectancy for those with sickle cell disease is between 42 and 47 years old.

Samuel Boykin Hunter Jr. was born in 1970.

It was not long thereafter before his parents realized something was not quite right with their first-born baby boy.

"We were sort of playing around I was listening to some music with him. And his eyes were jaundiced which said to me that he's hemolyzing," father Dr. Samuel Hunter recalled about his then three-month-old son.

A series of tests produced a sick cell disease diagnosis.

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"I think one of the physicians made the comment he probably will not live to see his 30th birthday," mother Serena Hunter remembered.

That doctor's grim prediction proved true. But how their son spent the years he had filled his parents with pride.

From Fork Union Military Academy to Xavier University of Louisiana where he graduated with honors.

RELATED: Richmond family shares their sickle cell story of love and loss

"I told him, I said, 'Son, I'm real proud of you.' He said I'm proud of me too dad, I did better than either you or mom did undergraduate school," Dr. Hunter said with a smile.

His son went on to earn a Master's of Psychology from Ohio University and was accepted into law school at Ohio State.

His parents believe the stress of his studies may have taken a toll on their son's body, allowing sickle cell disease to take their son too soon.

"I remember very clearly the day that he passed away. Although he was sick, he was still looking forward," Serena Hunter said.

"He was completing the thesis for his Master's. It was opened down here on the dining room table," his father said.

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"He said, Mom, I'm just so tired. He was coming up the stairs and I was going downstairs, and I said, well just come on and lay down and just take a long nap," Serena Hunter said. "[He] just never woke up. So it was very peaceful."

The sickle cell trait can pass down through generations.

Sickle cell disease is a genetic disorder when a child inherits two genes, one from each parent, causing round red blood cells to turn into rigid, sickle-shaped cells not able to move effortlessly through the body.

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That leads to fatigue, acute pain, and sometimes organ damage.

Of the 100,000 Americans living with sickle cell disease, 90 percent are African American.

"Is it just a Black disease? No," Dr. Wally Smith, Director of the Adult Sickle Cell Program at VCU Health, said. "Anybody in the United States should know their sickle cell status. You need to know your status because you may have a baby. And if you have a baby with somebody who has a trait, you have a chance of producing a child with Sickle Cell Disease.

Dr. Wally Smith, Director of the Adult Sickle Cell Program at VCU Health
Dr. Wally Smith, Director of the Adult Sickle Cell Program at VCU Health

Those test results could lead to more questions for would-be parents.

"You need to be aware of the consequences. Can you deal with it? Can you help a child grow through to adulthood? Will you do it knowing that if it doesn't go the way you hoped it would go, it's pain with it. And in that pain lasts a long, long time," Dr. Samuel Hunter said.

"Although he was 28 when he passed away. It was a life that he enjoyed," his mother said.

"It makes me proud that he was a courageous young man. He didn't let stuff stop him. And so often too many of us do. Too many of us do," his father said. "And so you just take courage from his life and what he did and how he did it."

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