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Family struggling with sickle cell hopes to encourage more people to donate blood

African-American donors, especially, are needed
Posted: 4:30 AM, May 09, 2017
Updated: 2017-05-11 10:49:56-04

CINCINNATI -- A local family is encouraging people to consider donating blood to ease the suffering of those with sickle cell disease. 

Siblings Taryn and King Walker have had the disease since they were babies and heavily rely on local blood donors to stay alive. They need 15 to 20 blood transfusions a year to prevent potentially deadly complications from their condition.

However, they try not to let the disease get in the way of their dreams. The high achievers excel at the School for Creative and Performing Arts , where Taryn majors in technical theater and King in dance and band. Taryn had to change her major from ballet because of the physical toll of the disease.

Taryn, 12, and King, 10, have been on transfusion therapy since they were a few months old, done at Cincinnati Children's Hospital with blood collected from the University of Cincinnati's  Hoxworth Blood Center .

“For Taryn and King to have somewhat normal lives, they require blood transfusions every four weeks,” said their mother, Charmelle Walker. “Their red blood cells only last for 14 to 21 days vs. a healthy kid’s red blood cells lasting 90 to 120 days.”

The Kennedy Heights resident said her children become exhausted and sluggish by the beginning of week four.

“We are used to this, but there are times when we are scared because we worry about what the future holds,” said Charmelle, a nurse in private practice.

Hoping there will be enough blood creates constant stress. About one in every 500 African-American children are born with the disease, and patients respond best to blood with the same genetic heritage. Yet only 4 percent of donors at Hoxworth are African-American.

Missing a transfusion can mean serious, painful side effects for patients. The Kings are asking for more donors for themselves and others.

“I want them to know that their donations affect people for the better and change their lives,” said King, a fifth-grader who is an avid basketball and baseball fan. “If I don’t get the blood in time, I get tired, I don’t want to do anything, I just want to sleep. I wish someone would find a cure for sickle cell already.”

Taryn agreed. “Because of this disease, I can’t participate in many activities, like swimming in public pools or ice skating.”

Dr. Matthew Montgomery of Hoxworth explained the condition: “Sickle cell disease is an inherited disorder of red blood cells wherein the cells contain an abnormal hemoglobin molecule which can alter the shape of the red blood cells, making them stiff and hindering their ability to pass through small blood vessels, leading to potential organ damage.”

Alecia Liptop, public information officer with Hoxworth, said there’s a donor shortage.

“When it comes to treating a disease like sickle cell, having the right blood match is crucial, and patients need blood from the same genetic heritage,” Liptop said.

Charmelle has become an advocate for raising awareness about the importance of blood donations in the African-American community.

“For us, each day is filled with worry, and yet I am energized by hope. I believe that we can bring about change. We need to get the conversation going,” she said.

She speaks at fundraisers and is the secretary of the Sickle Cell Alliance Foundation

“If we didn’t have so many kind-hearted donors in the community, Taryn and King wouldn’t have come as far – but we still have a long way to go,” she said.

Donors can make an appointment by calling (513) 451-0910 or visiting hoxworth.org.