When three best friends came together with the goal of saving a child’s life, they had no idea how far-reaching the dream would become.
Susie Zeegan, a co-founder of the Elizabeth Glaser Pediatric AIDS Foundation, told her story Tuesday night to about 140 Northwestern students at Dance Marathon’s winter fireside in Willard Residential College. The California-based foundation is DM’s primary beneficiary for 2001.
Zeegan, Elizabeth Glaser and Susan DeLaurentis established the foundation in 1988 after Glaser’s 7-year-old daughter, Ariel, died of complications from AIDS.
“It was three moms, three best friends, sitting at a kitchen table,” Zeegan said. “We didn’t have the faintest idea what to do.”
While giving birth to Ariel in 1981, Glaser unknowingly received a contaminated blood transfusion. She and her husband, Paul, had another child, Jake, three years after Ariel was born.
At the age of 4, Ariel became very sick. Doctors found that the little girl was HIV positive and tested the rest of the family for the disease. Elizabeth and Jake also tested positive. Ariel had contracted the disease from her mother’s breast milk, and Jake had been infected in the womb.
Today Jake lives with his father, who does not have HIV. Glaser, a grade-school teacher, died in 1994.
Zeegan learned from Glaser that it was especially difficult to get medicine for Ariel, who soon became unable to walk or talk.
“We saw in front of our own eyes the difference between a child with HIV and an adult with HIV,” Zeegan said.
After Ariel died, the three women were determined to save Jake’s life. They first planned to join existing groups in Washington, D.C. But they soon discovered that most people, even doctors, “didn’t even realize HIV was something that children got, that it affected them differently from adults,” Zeegan said.
Zeegan and her friends decided to raise money for research, education and public policy related to children with HIV and AIDS. They also wanted to make adult drugs available to children. After Glaser died, her friends and family worked to make the foundation national and eventually international.
She praised NU’s Dance Marathon, saying: “It’s remarkable what you’re doing. You’re standing up at NU and saying, ‘We’re going to have a great time, but for a good reason.'”
Bob Pfeiffer of the Alexian Brothers AIDS Ministry, which runs the Bonaventure House in Chicago, also spoke at the fireside. Dance Marathon Outreach has volunteered at the house, a hospice for homeless people with HIV. Pfeiffer said the house was originally a place where people “found a place to die with dignity.”
It wasn’t until the introduction of new medicine in 1996 that the people at Bonaventure House, Pfeiffer said, “had to look at living.”
“We are committed to the work that we do,” he said. “We are returning [these people] to individual life.”
Pfeiffer introduced students to Vicky Woppel, a house resident. Woppel, 30, then told how she started using drugs after high school. She had two children before learning she was HIV positive.
“At first I was in denial, and I was angry,” she said. “But I learned it’s okay. Life goes on if you allow it.”
Woppel said she started taking more drugs after having her third child and eventually had a stroke in 1997. Her doctor told her about the Bonaventure House, and she moved in that year.
She has stayed clean and is trying to bond with her children, all of whom are HIV negative. She said her goals now are to get her own apartment and become an addiction counselor.
“I’m very grateful to be alive,” Woppel said. “I want you to know that I’ll be around for a while.”
