by Alison Bulman
Photography by John McNeil & Kevin Leduc
Portland Magazine

How do you tell a 6-year-old she is going to die soon? "My mom told me there was something in my blood that made me unable to fight off colds and stuff," Autum Aquino remembers. "One of the first things I asked was if we were going to die. She told me everyone dies. We just might a little sooner."

In November 1986, Autum’s mother, Theresa Dannemiller, received a phone call alerting her that her ex-husband, Autum’s father, Jorge, was in the hospital. He was dying. A Vietnam War veteran coping with physical pain and severe trauma, Jorge Aquino had resorted to heroin to ease his suffering. Intravenously he contracted HIV. Theresa got tested for the virus: positive. Her ex-husband since Jorge, Tim Dannemiller, tested positive, and Autum, Theresa’s 17-month-old baby, had it, too.

Just five years since the word AIDS was first heard by the American public in 1981, the disease had somehow crept into Theresa’s Bangor, Maine, home and infected everyone inside with the exception of Theresa’s oldest daughter, Ja’nette.

At 6 years old, Autum was the first elementary school child in Maine diagnosed with AIDS. When her family decided to go public, near hysteria resulted. Parents of Autum’s peers transferred their children to different schools. When fielding questions at a Maine AIDS seminar the family gave in 1991, people wrote anonymous comments on index cards like, "All AIDS victims should be shot like interbred cats," and "If you get AIDS from a blood transfusion, that’s too bad, but the gays should die from it!"

Doctors and nurses refused the family care. They washed seats they’d sat in. Afflicted with perpetual illness, fatigue, and social stigma, the health of Theresa, Tim, and Autum was plummeting. Theresa made funeral arrangements for herself and her daughter after doctors told her the disease was a death sentence for them both.

After Portland Magazine published an article on the family in 1992, Theresa died August 1 the following year.

"I was 8 years old," Autum remembers. "She was going to turn 30 in a month and three days. She’d gotten more tired and sick. She stayed in more. I knew it would happen eventually. I helped her out a lot over that last week in July."

After Theresa died, they found she had toxoplasmosis, an illness caused by a microorganism sometimes found in cat feces and dirty kitty litter. It can affect the central nervous system and brain and is particularly dangerous to pregnant women and those with compromised immune systems. No one knows how she got it.

Family and friends made the traditional AIDS quilt for Theresa and for Autum. Autum was lovingly surrounded by aunts, uncles, and her grandmother – lots of supportive people.

Autum moved to Hamden to live with her mother’s sister, Lynn Woods, and her husband, Brad, both employees at the Hamden postal service. While going through some files last year, Autum stumbled across the 1992 Portland Magazine article. In it her mother shared her diary, her thoughts, her anticipations, her prayers.

"I know I will also die from this disease, but not yet – I can’t die yet," she wrote. "I have to take care of Autum first. Dear God, please let me take care of my baby."

Because of the grim predictions doctors gave her, Teresa wrote of Autum: "I know she will never see her teenage life… I live to fight AIDS and teach people about AIDS. I pray that someday people will understand and help one another."

Teresa did not live to see how fully her prayers were answered. She did a better job of taking care of her baby than she’ll ever know – equipping her with the determination to live and educate. Autum celebrated her 18th birthday on March 4.

"When I was born, they said I wouldn’t live to see 2," Autum says. "When I was 2, I wouldn’t make it to kindergarten, then wouldn’t make it to elementary school, then not to middle school. Finally, they just stopped predicting ’cause I beat every single time limit," she laughs.

A senior at Hamden Academy, Autum shines. She belongs to the French Club, loves drama, and attends all the school dances. She goes to movies, goes bowling. She listens to Ja Rule, NSYNC, and DMX. Her boyfriend, Joey, is into Jimi Hendrix and Led Zeppelin. "Stairway to Heaven" is their song.

"Parents of my boys I date have loved me but are kind of worried," Autum says. "I meet them right in the beginning so they can ask me anything, as much as possible, to put them at ease."

She’s brought the parents to AIDS presentations she’s given in school. During one presentation she gave to Joey’s class, she found people glancing over at him.

"He almost started crying," she says. "He’s always worrying I’m going to get sick and die. I try to tell him I’m too spiteful to let the disease kill me, that I take the medication and eat right."

People ask Autum if she has to stay a virgin. She points out that condoms are 98.5 percent effective. They ask how she can tell her husband she’ll never be able to have kids. But with the right medication, she explains, infected people have a less than 1-percent chance of giving AIDS to their unborn children, if they are artificially inseminated, have a C section, and don’t breast feed.

"I’ve always wanted to have children," Autum says. She is not afraid to dream. "When I get older and am married, I’d love to have a place in the summer for my kids –it’s corny, but something traditional in Bar Harbor or Ogunquit – not too sheltered. I always lived in rural towns before I got a car and it drove me crazy."

She’s been to every state on the East Coast as well as to California and Quebec.

"For my honeymoon, I want to go to Puerto Rico," she says. Her father was Puerto Rican. Her boyfriend is half Italian, so she’d like to see Italy, too.

"I want to travel a lot," she says. "If an opportunity to do something comes up, I’ll grab it."

This summer she plans to go to Waikiki with a friend’s family.

"When Aunt Lynn said I could go, I was so excited," she says. "I can’t wait!"

Her work as a credit card telemarketer for MBNA Orono is earning her the $800 she needs for the trip.

"I like having a job I can go to to earn money for myself," she says.

An added bonus was an offer to appear in Glamour magazine two years ago for a piece they did on women with AIDS.

"I usually wear my hair in a ponytail or in messy buns on both sides of my head," she explains. "But they said, ‘Well, we want you to look older,’ so they did my hair. I hated it."

Autum is really living. Six years ago she went on a new cocktail of three medications, when the drugs were just getting on the market. Tests done every six months to track their effects showed gradual improvement. Her virus-fighting T-cells went up, now maintained at the average range for a healthy immune system, and the viral load (amount of infected cells in the body) went down and is staying at a near undetectable level.

"I wasn’t getting colds just because of the change in the weather like I did before," she says of the first noticeable signs that the drugs were working. "If friends were sick, I didn’t catch it as easily."

Her friends are very protective.

"If they’re sick they won’t want to come too close to me," she says. "Around meal times they’re concerned about getting me something to eat. I have to eat breakfast and dinner when I take my pills."

Morning and night she must take five Viracept, one Epivir, and one Zerit. Fortunately, she says, they have few side effects aside from making her dizzy if taken without food, or raising her cholesterol if not taken with enough water. The cocktail is the combination that works for her. There are more than 30 drugs on the market taken by AIDS patients, in different combinations and doses. Everyone, including the 10 to 15 people she knows personally with AIDS, takes something.

"If I’m not hungry," she says, "I still have to eat, and at the same time every day. The virus is so smart that it learns the pattern of when I take the medications. If I’m late taking them, it can replicate within hours."

As soon as one is infected, one has HIV.

Autum explains: "HIV and AIDS are the same exact cell. To be diagnosed with AIDS, you have to have HIV, less than 200 T-cells in your body, and one or more opportunistic infections (illnesses that only infect immunodeficient bodies). Examples of these are thrush, a yeast infection in the mouth causing a white coating on the tongue, and hairy leukoplakia, an acute, cottage cheese-like thrush.

Fortunately, Autum has only seen pictures of the condition. A pregnant woman or someone with cancer can also get illnesses like the toxoplasmosis.

Rather than harping on all the ugliness of AIDS, however, Camp Chrysalis was created for people infected and affected by the disease. Its founders, witnessing the devastation of AIDS on people they knew, wanted to create a place to celebrate life. For one week every summer, they rent a camp location for 50-60 people to meet, talk, and have fun. They have a sister camp in Nicaragua, where doctors and nurses donate their time.

Autum says there are rumors in Africa that if an infected man has sex with a virgin, he will be cured. It’s just one more example, she says, of ignorance. She is committed to educating locally through the AIDS network called Students for AIDS Facts, Education and Resources, or "SAFER," consisting of 20 teenagers from area high schools.

"We always try to get students to not hide their ignorance and to seek out education to protect them from the virus," Autum says. "Getting HIV is not a death sentence anymore, but they can’t think they can get it and it won’t affect them."

In an "HIV 101" presentation to different schools, SAFER discusses safe sex and demonstrates condom use (if the school allows).

"Some schools won’t let us even say the word condom," Autum says. "Students are having sex. Some are getting pregnant. Adults shouldn’t turn the other way."

Autum will not say she has AIDS until the end of the presentation. She’ll ask if anyone knows a person with AIDS. Maybe one or two at most, if anyone, will raise their hands. She’ll ask what they think someone with AIDS looks like, if you can spot them on the street.

Then, "To everyone who didn’t raise their hand," she says, "now there’s someone you know who’s infected.

"I can tell by their facial expressions that they’re really shocked – they had no idea," Autum says.

She encourages them to ask anything. She tells them, "We’ve heard everything."

Talking about having AIDS has always been easy, Autum says, because it’s been public since she was 6. Born in Kingston, New York, Autum and her family moved to Bangor, then to Portland, where she attended Howard C. Reiche Elementary School for kindergarten, first, and second grades. She went to Searsport Elementary for six years, then Hamden Reeds Brook Middle School.

She’s led student-parent assemblies before attending some of the schools so they "have a mass education on me," she says. "About what you can’t do if I fall and bleed, to get a teacher, to not touch it and to not help me. I’d know what to do: to try as hard as I can to not get blood on the floor and to get to a sink."

She always carries Band-Aids for paper cuts.

Since her second-grade year at Reiche, she says "There was a good response, and people were always very accepting. No one said we don’t want this kid in our school, like some did before. The education is out there now, that you can’t get [AIDS] from toilet seats or hugging."

She says that some common myths about AIDS still exist, such as it being transmittable through mosquitoes or kissing, and that all bodily fluids can pass it on, like urine or stomach acid, which is not the case.

"AIDS was thought to be a gay disease," Autum says. "When we moved to Portland, the gay community supported us the most. They were the coolest bunch of people. All my gay friends say I’m very flamboyant and have the most gay pride."

Autum has always loved Portland, so she is scouting area colleges like St. Joseph’s, the University of Southern Maine, and the University of New England.

"My goal is to become a pediatric nurse and work in a children’s hospital in the AIDS ward," she says.

She’s acquired a lot of unofficial experience already during her numerous trips to the Boston Children’s Hospital, like the time when her lung collapsed. Autum has had chickenpox eight times, shingles (adult form of chickenpox) twice, and perpetual bouts withs pneumonia, colds, and flues.

"I’m always sniffling and coughing," she says. "Especially fall to winter."

But since shingles in the seventh grade, when huge blisters and a feather brushing across her skin caused great pain, she has suffered no major illnesses. Autum attests to one of the most valuable qualities her mother instilled in her. Theresa would be proud.

"My mother always had the determination of a bulldog," Autum says. "When she died, I became more determined to fight. The doctor said, ‘Do it out of spite. Prove it wrong.’ I’ve always been stubborn. I’m going to beat it. I’m going to be old."

Autum Aquino appears on an educational video through the Eastern Maine AIDS Network. To order a video cassette, call Dennis Cranson at (207) 990-3626.

©2002 Portland Magazine

Colin Sargent, Editor & Publisher
editor@portlandmonthly.com
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