When Annisha Wilburn was 4 years old, she went to live with her grandmother, Valerie Reeder-Bey, who is HIV-positive.
Reeder-Bey knew she had to talk about her condition with her granddaughter. The hard part was finding a way to do it without frightening her or delving into uncomfortable details.
"I was living in fear that anything could happen," said Reeder-Bey, 46, who lives in Woodbridge. "I wanted to tell her. I just really had to find the way without being graphic."
She started by jotting down things that Annisha shouldn't worry about: "It's okay to hug," she wrote. "It's okay to hold hands." As the girl got older, she started making her own contributions to the list. Talking on the telephone with her grandmother was okay, Annisha pointed out, or going rollerblading together.
Thus was born "My Grandma Has AIDS: Annisha's Story," a 14-page illustrated children's book that was published this year by a pharmaceutical company and distributed at the U.S. Conference on AIDS in Denver and a World AIDS Day commemoration in Boston.
Annisha and her grandmother are both listed as authors, but the book is written in Annisha's voice. "Hi. My name is Annisha. This is a story about my grandma," the book begins. "She is real special to me. My grandma is just like any other grandma. My grandma has AIDS."
The book goes on to describe the various things they do together. "I know that if my friend has AIDS, I cannot catch it by being their friend," Annisha says in the book.
Reeder-Bey, who also lives with her husband, Tommy, is excited about the book's distribution and hopes parents will use it to introduce the subject of AIDS to their children. She is also the founder of Heaven in View, a nonprofit that provides health counseling and support groups for people living with AIDS.
"I would love for it to be in every household. That's the ultimate dream," she said. "Even if it's not in every household, I want everyone to know about it."
The road to "My Grandma Has AIDS: Annisha's Story" was a long one. It began when Reeder-Bey went to her own mother, looking for solace after she learned she was HIV-positive. Reeder-Bey said she spent 22 years as an alcoholic and drug addict.
Her mother could not accept the diagnosis and sent her daughter away, Reeder-Bey said. "I forgive my mother now, but then, I couldn't take it," she recalled.
Six years later, Reeder-Bey was alcohol- and drug-free and embarking on a new life as an AIDS activist and drug counselor. Then her daughter, who has had her own struggles with addiction, asked her to take in Annisha.
"We had already spent a lot of time together," Reeder-Bey said of Annisha. "She just became a part of my life."
When Annisha was 6, Reeder-Bey thought the two of them had a book worth sharing. She went to several well-known children's book publishers, who told her that the subject matter was inappropriate or didn't fit their needs.
But the book did catch the eye of officials at Agouron Pharmaceuticals, a La Jolla, Calif.-based company that makes the AIDS drug Viracept, and Agouron published it.
Agouron has an active outreach program that focuses particularly on minority communities, and the book worked well with that program, said Joy Schmitt, a company spokeswoman.
Reeder-Bey also made sure that Prince William County school administrators got a copy of "Annisha's Story." Annisha is a third-grader at Featherstone Elementary School.
"It's a wonderful book," said Kathy Lanzafama, coordinator for science and family life education for the county school system. The school district would not introduce the book to a third-grade class, but it would be perfect for Prince William fifth-graders, who are beginning to learn about bacteria, viruses and diseases, Lanzafama said.
Right now, the school system uses only textbooks when discussing those diseases.
"That's the reason why that book would be such a great resource," Lanzafama said. "I just like the way the story was written from [Annisha's] perspective. They covered the basics of what you would want students at that age to know to feel comfortable."
Annisha attended the AIDS conference in Denver last month where her book was circulated. Her knowledge of how one contracts AIDS is still developing, and the book skirts those issues. She said she knows that the disease can make you sick but that you can't get it from everyday contact.
"I can't take her into the graphic parts of it," Reeder-Bey said. "When you talk about contracting the virus, you're talking about certain behaviors that put you at risk, and I don't think a child needs to know that."
Agouron said it plans to distribute the book at other AIDS conferences, with the authors' permission. In the meantime, Reeder-Bey is a one-woman distribution machine, bringing books to her doctor's office, to work, to wherever she thinks someone would pick one up.
"I want people to open up and start talking to kids about it. Kids want you to be open with them," Reeder-Bey said.
And Annisha said she plans to keep writing. She has advice for other would-be authors: "I think they should write what's in their imagination, and write what's in their heart."
CAPTION: Annisha Wilburn and grandmother Valerie Reeder-Bey wrote their book about AIDS from Annisha's perspective.