St. Jude patient D'Avalon, age 18, sickle cell disease

A more normal life

High-school senior D’Avalon has been fighting sickle cell disease since he was one week old. But thanks to treatment at St. Jude, he is able to look to the future with optimism.

Being a senior in high school is an exciting time — a time of blazing your trail into the future. That’s what 18-year-old D’Avalon is doing today. But when he was an infant, his mother, Dana, recalls, “I was afraid he wouldn’t have long to live.”  

D’Avalon was found to have sickle cell disease at one week old. An inherited disorder affecting red blood cells, the disease spurred pain crises that put D’Avalon in the local hospital on an almost monthly basis. He received regular blood transfusions, but these took a toll on his little body. When D’Avalon was 4 years old, his doctor referred him to St. Jude Children’s Research Hospital for his continuing care.

St. Jude is a national leader in the treatment of sickle cell disease, which affects 1 in 365 African-Americans and some people of Hispanic, Mediterranean and Native American descent. The St. Jude sickle cell program is one of the largest in the nation, with expansion plans including a new long-term follow-up program to better understand how the disease progresses and discover new ways to prevent its complications.  

I came to St. Jude because of something negative, but so much positive has come from it. St. Jude is more than a hospital. It’s a place to grow up.

D'Avalon, age 18

At St. Jude, D’Avalon started a drug called hydroxyurea, which cut down on hospitalizations and eased other symptoms. This treatment enabled D’Avalon to start living a more normal life.

 “He wanted to go outside more,” Dana said. “We were able to start doing more. We were free from being at the hospital so much.”

Sickle cell disease is chronic, and while D’Avalon’s symptoms have been greatly reduced, he still suffers effects. But he also has a future. A talented musician and singer, D’Avalon is considering a career as a music producer.

“I came to St. Jude because of something negative, but so much positive has come from it,” D’Avalon said. “St. Jude is more than a hospital. It’s a place to grow up.”

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