Bryan’s House to celebrate 2 decades

Small volunteer care home helping children with HIV evolves into large facility serving 850 families yearly

by John Wright of Dallas Voice

It started in a small Tudor house at Knight and Brown streets in Oak Lawn, a place where volunteers could care for children with HIV/AIDS and their families.

Today, Bryan’s House is an 18,600-square-foot facility adjacent to Southwestern Medical Center, with 40 full-time employees and a $2 million annual budget. It serves 850 children and their families each year.

And it no longer focuses only on kids with AIDS; the organization has expanded its mission to serve children with all types of serious medical conditions and their families, as well as the healthy children of parents with AIDS or other afflictions.

On March 27, those who’ve been closely involved with Bryan’s House, watching it grow and change over the last two decades, will gather to celebrate the one-of-a-kind facility’s 20th anniversary.

“It’s really kind of amazing that, here it is 20 years later, and that little seed I planted continues to grow,” said 59-year-old Stefanie Held of Dallas, who was the initial driving force behind Bryan’s House. “If I think about it too much, it just brings tears to my eyes.”

Starting small

Held was working as director of pastoral services at Temple Emmanu-el in 1987 when her rabbi, a volunteer for the AIDS Interfaith Network, mentioned that a family was coming to Dallas from Colorado.

The mother of the family, Lydia Allen, had contracted HIV/AIDS from a blood transfusion and passed it on to her two sons at birth. Because of the stigma of the disease in those early years, the Allens had been brutally ostracized in their hometown.

Held had heard of HIV/AIDS, but she knew little about it. Nevertheless, she invited the family over for dinner, and they quickly became friends.

Held soon began caring for children with AIDS by going into their homes and even taking them into hers.

“I realized, as the numbers grew, that I couldn’t do it all by myself,” Held said.

She organized a network of volunteers to go to the homes of children with HIV/AIDS, but they often were being sent into bad situations. Then came the idea for Bryan’s House, named after one of Lydia Allen’s sons, and Held launched an intense grassroots fundraising campaign.

“I was so focused on getting that accomplished and getting these kids cared for that I could get money out of a stone,” she said.

The original Bryan’s House had room to house eight children, Held said.

“As soon as I opened the doors, it became too small, because the numbers were growing so quickly,” she said.

Space was among a number of challenges Held and others faced. For example, although the LGBT community since has become very supportive of Bryan’s House, it wasn’t always that way.

“Everybody was trying to work out of the same little pot of money,” Held said.

“It was a threat that I was bringing cute little babies into this fight.”

In those days, prior to the advent of AZT and other drugs, newborns with HIV/AIDS would frequently die within months, and those living with the disease were often very sick. But as she worked with them 24 hours a day, seven days a week, Held said the knowledge that she was giving them something they wouldn’t otherwise have had kept her spirits up.

“I was helping them so much that it wasn’t depressing,” she said, adding that she also had the support of her husband and family.

“It gave me joy. You didn’t stop and focus on the big, black picture that was going on around you. You couldn’t, or you couldn’t go on,” she said.

Another big issue back then, which remains today, was the immense fear associated with HIV/AIDS among the general public, which had little or no understanding of the disease, Held said.

“People weren’t very nice about it,” she said. “It was really hush-hush. No one in the neighborhood could know what we were doing.”

Despite all these obstacles, Bryan’s House somehow managed to prosper. In 1990, the original structure was enlarged so that it could house 34 children during the day and 17 overnight. Then, in December 2000, Bryan’s House moved to its current location, tripling its childcare capacity and allowing space for a new adolescent program.

Staying alive

David Thomas, executive director of Bryan’s House, said many facilities across the country have tried to model themselves after it over the years. But in large part they have come and gone.

Bryan’s House was the first, and remains the only, facility like it in the country, Thomas said.

“I think it’s unusual for a social services organization, especially one that serves individuals living with HIV, to have made 20 years and to still be going,” he said. “For us, it’s a point of reflection that we’ve come a long way. I think it’s very significant.”

The key to the survival and growth of Bryan’s House, Thomas said, has been the sheer breadth of services it provides combined with its ability to adapt to changing times.

While many facilities offer one specialized service, such as medically managed day care, Thomas said, Bryan’s House offers day care, overnight care, adolescent and school-age programs, on-site nursing, on-site counseling, free distribution of donated goods to families, emergency financial assistance, case management and more.

In addition, Bryan’s House serves not only children, but also their siblings and families.

“From the beginning, Bryan’s House was the only one that really had a broad view of their mission,” Thomas said.

But that mission also has changed dramatically since 1987, which is reflected by the board of directors’ recent decision to change the facility’s official mission statement.

When Bryan’s House opened, it served primarily infants with HIV/AIDS, who then had a 35 to 39 percent chance of contracting the virus from infected mothers, Thomas said. Today, due to medical advances, the chance of an infant contracting HIV/AIDS at birth is only 1 to 2 percent.

As a result, infants with HIV/AIDS represent less the 5 percent of the population Bryan’s House serves, Thomas said.

Children of all ages with HIV/AIDS represent 15 percent, while the remaining 85 percent is divided between children with other serious medical conditions and the healthy children of parents with medical problems, such as HIV/AIDS or substance abuse, who are unable to properly care for their children.

Thomas said in recent months, Bryan’s House has served children with everything from severe burns to insulin-dependent diabetes to autism to Down syndrome.

“We’ve opened our doors wider to take in children with a greater variety of needs,” he said.

This change came partly in response to cuts in the federal Ryan White CARE Act, which cost Bryan’s House $250, 000 a year in AIDS funding.

“At it’s best, we weren’t funded well, and now we’re going rapidly back the other way,” he said.

Bryan’s House traditionally has operated half on government funds and half on private donations and grants, Thomas said. Recently, however, it has been forced to seek out new sources of private funding to make up the difference.

So far, he said, things are going well.

“We reacted by starting to make some cuts,” he said. “We started slowing down the cuts, and really a lot of those cuts we’re not going to have to make at all.”

Although she has less of a hands-on role in Bryan’s House these days, Held has been consulted on all the changes.

She said she understands they are absolutely necessary, adding that they are not at all at odds with the original intent of the facility, taking care of children.

“The ultimate joy is that baby’s aren’t being born with AIDS anymore,” Held said. “It’s still the mission that was in my heart.”