When Robert Davis Jr. died from a spleen explosion, the 18-month-old’s friends and family wanted to do something to raise awareness of his illness.

Davis suffered from an infection, which turned fatal because of his sickle cell anemia — a genetic disorder that causes the body to make abnormally-shaped red blood cells that can block blood flow.

“He was a beautiful boy,” said the Rev. Gene Carter, executive director of the Central Texas Sickle Cell Anemia Association. “I felt something could have been done or should have been done to maybe save that child.”

The association will hold a telethon from noon to 6 p.m. Sunday on Fox 44 to bring awareness to the disease and generate funds to operate for the next year. Carter said his goal is to get 1,000 donations of at least $50, for a total of $50,000.

“We’ve never raised that much, but we set our goal this year,” he said.

Carter and the boy’s father, Robert Davis, started the nonprofit 30 years ago to educate residents and medical providers so people with the disease can receive treatment as soon as possible.

After conceptualizing the idea, the nonprofit developed a rapport with the medical community in Central Texas. This allowed the organization to refer its clients to medical personnel who can provide them with the proper help in a timely manner.

Before the organization was established, residents who suffered severe pain due to sickle cell anemia had to travel to Houston or Dallas for treatment. The time spent traveling could sometimes be fatal.

“We feel that we have provided a service that was not provided by any other agency,” Carter said.

Before the nonprofit was established, sickle cell patients — thinking they could die any minute — would get frustrated by the lack of care. Now, the association serves eight Central Texas counties and makes educational presentations on the disease as well as offers counseling to those affected by it.

“I saw a need for taking care of people with sickle cell disease — at least giving them information about the disease so people would understand that it doesn’t have to be fatal if you get proper treatment,” Carter said. “(The nonprofit) helps others who might be going through some of the same things, but are not aware of what the results could be.”

Contact Sarah Rafique at srafique@kdhnews.com or (254) 501-7549. Follow her on Twitter at KDHreporter.

I'm the education reporter at the Killeen Daily Herald. Follow me on Twitter at https://twitter.com/SarahRafique

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