Valley family tells its story about living with HIV

Heidi Simon was exposed to HIV in the early 1990s. She tested negative. But nearly10 years and four children later, doctors told her that she had tested positive for HIV. So did her fourth child, who was a 1-year-old at the time.

“It took its time, the disease,” Simon said. “It took a while for both of us to be diagnosed.”

Simon plans to participate in today’s AIDS Walk Arizona and 5K Run in downtown Phoenix to raise awareness of the disease.

The annual event, hosted by Aunt Rita’s Foundation, helps raise awareness and funding for HIV and AIDS research in the Valley.

The race begins at 9 a.m. at Third Avenue and Washington Street.

Simon’s story

Simon fell in love with Alex while attending college in California.

After proposing in April 1991, he started getting sick.

Doctors floated all kinds of theories, but it wasn’t until Alex slipped into a coma that a diagnosis revealed Alex had AIDS, and he was not going to make it through the night.

Simon agreed to take an HIV/AIDS test. When she went back two weeks later, a nurse told her she was “lucky, and needed to be more careful next time.” She had tested negative.

Simon eventually married and moved to Ohio, where she had three children. After her third child, doctors told Simon she had cervical cancer and could not have any more children.

“So you can imagine my surprise in 2000, when we were blessed to find out I was pregnant with our fourth child,” Simon said.

Her fourth child, Isaac Ramirez, was a “bouncing, beautiful, healthy baby,” but his health started to decline when he was 3 months old.

After months of testing, Isaac was diagnosed as HIV-positive in July 2001. Simon was tested again and was found to be HIV-positive as well. Her husband and other three children tested negative.

In 2002, the family moved to the Valley to be closer to Phoenix Children’s Hospital, home of the Bill Holt Clinic, a comprehensive pediatric HIV clinic.

Now a teenager, the boy who suffered through three comas “wakes up every morning with a smile,” Simon said.

The disease has left him with some physical disabilities, but Isaac is a national champion in archery and swimming, and he competes in wheelchair basketball.

Raising awareness

Walk organizers will divide the proceeds among the foundation’s 17 member agencies, which offer programs that prevent HIV/AIDS or assist those living with HIV/AIDS. The goal is to raise $500,000

For Executive Director Kit Kloeckl, it is just as important to educate and raise awareness as it is to raise funds.

“If we can get every Arizonan tested and get those who needed it in care, the chances of transmittance drop by 96 percent,” Kloeckl said. “While we haven’t ended the disease, we can end the epidemic.”

Kloeckl said she also hopes to educate younger generations about the disease and the impact it could have on them as they grow up.

“Twenty-six percent of new infections are (among) ages 13 to 24. Obviously, we’re not connecting with young people,” Kloeckl said.

Part of Simon’s activism is encouraging everyone to get tested, especially women who are pregnant or want to start a family.

“You either have it or you don’t, but just get tested,” Simon said. “You never know. You could save your life. You could save your baby’s life.”

If a mother is diagnosed HIV-positive, there is a one in four chance that one of her children also will be diagnosed, Simon said. When a mother is tested and subsequently treated during pregnancy, the chances of a child being born with HIV decrease to 0.001 percent, she added.

Not one to let the disease control her life, Simon set goals for herself: lose weight and run her first 5K. She has since lost 86 pounds in the past 13 months.

Her teenage son, Antonio, will run alongside her.

Isaac will work the registration table.

For details, go to phoenix.aidswalkaz.org.