Stephanie's Story

Stephanie's Story

Stephanie Ray lives the motto she teaches to other children and families living with AIDS: "Think positive, stay negative." For this spunky redheaded 11-year-old, each day is a priceless adventure.

It was not always this way for the Ray family.

Stephanie was born with full-blown AIDS and was only expected to live a short time. (The average life expectancy for children infected at birth is two to three years.) Her mother didn't know she had contracted HIV, the virus that causes AIDS, from a blood transfusion until her baby became ill.

Stephanie spent much of her first year in hospitals in Texas and New York. She is no stranger to pain and suffering. She knows what it is like to lose her mother and many of her friends. She knows what it is to live with the stigma of AIDS.

Once she traded bikes with a girl in her neighborhood, and the girl's mother began screaming, "Get off that girl's bike! You''ll get AIDS!" The mother then demanded to know who would pay for the bike.

Stephanie tries to ignore the thoughtless remarks that come her way. "I just forget about them," Stephanie said. "Like a bug on a windshield, I just wipe it off."

Since moving to Arizona two years ago, Rob Ray says things have improved considerably for his daughter. She is in the fourth grade at Discovery School, where she has many friends who accept her. She takes a combination of drugs which have greatly improved her health. It has been over a year since she has been hospitalized.

"One of the reasons Stephanie and I were able to come back to Phoenix to be with my family here was because of the Bill Holt Clinic at Phoenix Children's Hospital," said Rob. The clinic, located in the hospital's Specialty Care Center in downtown Phoenix, is the only complete pediatric AIDS program in the state.

Before he made the final decision to move, Rob met with the case manager of the clinic to make sure Stephanie would receive the care she needed.

"We were really impressed with the way the clinic was run," said Rob. "I knew Stephanie would be in good hands."

Rob likes the fact that the clinic addresses not only the medical side of his daughter's illness, but also the many financial and psychosocial issues connected to it. Patients like Stephanie need thousands of dollars worth of drugs each month just to stay alive, so financial counseling is often needed.

"The case manager at the clinic helped me find that help just recently," said Rob. "They know how to cut through the red tape and get what is needed."

Stephanie travels all over the country talking to other kids about AIDS. She has done a commercial with Magic Johnson, appeared on several television programs, and recently won a humanitarian award for her courage.

Stephanie likes a lot about her life. She loves sports, and describes herself as an "excellent" basketball player and a "very good" in-line skater. Her favorite subjects in school are math and science. Summer camp in Wis-consin and Malibu is "the best," she said. Her closest friend is her dog, Maxine (except for her father, she adds). Her dream is to become a doctor when she grows up.

Stephanie is living with AIDS at a time when doctors are hinting at a cure. She has defied the odds so far. She could defy them again. Stephanie is a miracle.

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