Inside Woman's Mission to Help Others Like Her Living with HIV/AIDS: 'I Don't Have Time or T-Cells to Waste'

With her nonprofit HEROES, Monica Johnson has helped more than 2,000 people in her small Louisiana town who are living with HIV/AIDS

Monica Johnson is not a woman who gives up easily. "'No' is my fuel word," says the 57-year-old from the tiny city of Columbia, Louisiana.

In 1990, when she first learned that she and her infant son, Vaurice, were HIV-positive, Johnson was told by doctors that her baby would have less than a year to live. Although little could be done to control the disease in the early days of the AIDS crisis, Johnson decided to embrace each day she had with her son — including throwing him monthly birthday parties: "I was in my 'I got to do everything mode.' I was trying to get all my stuff in before I lost him."

While Vaurice defied expectations, when Johnson tried to enroll him in preschool, their district refused him because of his HIV status. Even though being vocal about their status meant some people in their small town might shun her, Johnson successfully fought to find him a classroom.

Reflecting on that time, Johnson remembers cashiers at the local drug store disinfecting the counters after she came through. She also recalls that some people would cross the street so they wouldn't walk near her on the sidewalk — "like it was going to jump off on them." But, she says, she refused to hide: "It was not about me — it was about my baby. I wanted him to get everything he needed."

Monica Johnson. Kyna Uwaeme

When Johnson reached out to an HIV support group to address her own needs, she found she was the only Black woman in a room of gay white men — and that bringing her baby along with her wasn't an option.

So she applied for a grant and started her own group for women who are HIV-positive, offering free transportation and childcare. "I thought of all the reasons I wouldn't come," Johnson says, "and I eliminated them." She named her non-profit HEROES (Helping Everyone Receive Ongoing Effective Support).

After Vaurice died in 1993 at the age of 3 1/2, she expanded her HIV/AIDS outreach, and over the past 28 years HEROES has offered medical care, counseling and weekend retreats to 2,155 HIV-positive men and women in her community.

The need is great: 51 percent of all new HIV cases are in the South, and more than half of those newly diagnosed in the region are Black men and women. "The people that others don't want to be bothered with, we reach them and we help them," she says.

And Johnson has big ambitions for the future.

HEROES recently purchased five acres of land, the first step in creating a community campus for classes, an after-school program, and a community garden. The land will also provide low-income housing to serve people who are HIV-positive as well as the larger community, where the poverty rate is above 20 percent.

Government funding has all but dried up for non-profits like HEROES, so Johnson knows it will be a big lift to raise the money to build her dreams. But she says she's been counted out before: "No one knows when your day is coming," she says. "And one of my sayings is I don't have time or T-cells to waste. You've got to work and do right while you are here."

For more from Monica Johnson and other Women Changing the World, pick up the latest issue of PEOPLE, on newsstands everywhere Friday.