In April of 1987, a woman in Westchester County gave birth to a little girl. Among the traits she passed on to her baby were curly black hair and a wide, toothy smile, with an upper lip shaped like the double arches of a child's drawing of a bird in flight.
She also passed on a deadly disease that had been named only a few years earlier: AIDS. The mother, a prostitute, had probably contracted it from a dirty heroin needle. More than 4,000 Americans died of the disease that year. Within a few years, the annual death toll in the United States would quintuple.

This baby, sickly and premature, seemed to have no future.
April 2007
"Woot woot! I'm going to be twenty!" Lindsey Skellie wrote in an e-mail on the day before her birthday.
Despite all her doctors' dire predictions, Lindsey had not only lived through infancy and childhood; she was now about to leave her teens.
She was one of the lucky few. Since the beginning of the epidemic, the Centers for Disease Control estimates, 8,775 children who contracted HIV from their mothers have developed AIDS. Nearly 5,000 of these children have died. Thanks to treatments that have dramatically reduced the chances of a mother passing on HIV to her fetus, only about 145 children in the U.S. got HIV from their mothers in 2004.
Lindsey is among the first generation of "AIDS babies" to reach adulthood.

But her excitement about her birthday, like so many things in her life, was double-edged. A few days earlier, she had learned that she was probably going to be sent to a residential treatment facility -- not for the HIV, but for the eating disorder she has developed over the last year and a half.
After a lifetime of defying the grim odds of a virus she had no control over being born with, it is ironic, perhaps, that she is now battling an illness born of her own psyche.
If she doesn't get it under control, her doctors have told her, it will be the anorexia and bulimia, not AIDS, that kills her.
She celebrated her birthday at the Queensbury home of her sister, Courtney Smith, and Courtney's husband, Bob Smith. Because Courtney was 11 when her family brought Lindsey, who was almost 2, to Glens Falls, her relationship to her has often been as much maternal as sisterly.
Lindsey blew out the candles on the cake Courtney had baked. It was marble cake -- at Lindsey's request -- decorated with rainbow sprinkles and colorful paper umbrellas, special touches Courtney and Bob's 3-year-old daughter, Lela, had insisted on.

"I don't know how to cut a cake," Lindsey said, tentatively poking a knife into the rectangular cake pan. Her big, kohl-lined eyes darted up, looking for reassurance, and she smiled sheepishly. "I really don't think I'm doing this right."
"Just cut the cake!" Bob said, laughing.
Birthdays are a big deal to Lindsey, and to her sister, too. Courtney has always tried to make them as special as possible, she said, because she never knew how many she had left.
Lindsey ate a small square of cake, a diet soda and some spiedies Bob had grilled, also at Lindsey's request.
A little later, Courtney had to remind Lindsey several times to drink her Boost -- doctor's orders -- but Lindsey tried to get out of it.

"I had a doughnut for breakfast!" she whined. Finally, she relented, guzzling from the bottle with the wincing expression of a child forced to swallow cod liver oil.
Much about Lindsey is still childlike -- the soft, lilting register of her voice; her fondness for stuffed animals and pink, sparkly things; her tendency to pout at real or perceived slights. She has always had a coterie of people caring for her, in one way or another, and her combination of vulnerability and playfulness seems to invite people into her sphere.
Yet she is also remarkably spirited. Despite her hardships and physical frailty, she does not act like a victim; she is anything but meek. Her voice, though soft, is also throaty and her tone frequently sassy. And, she is the first to admit, she can be stubborn, especially about doing what she knows is good for her.
At a recent family therapy session, the therapist told Courtney not to allow Lindsey to go to the bathroom after she eats, so she can't make herself throw up.
"I don't want to be her warden," Courtney said. "I'm just really worried she's slowly killing herself."

A Glens Falls couple, Will and Kathy Skellie, adopted Lindsey after Kathy read an article about AIDS babies in a magazine, according to Courtney. Lindsey has a rocky relationship with her adoptive parents, who declined to be interviewed.
Courtney recalled that the family took precautions to make sure they didn't contract the virus, like wearing gloves when they changed Lindsey's diapers. "My grandfather said (to my parents), 'How could you jeopardize Courtney like that?'" she said. "AIDS was so new."
She also recalled Lindsey's frequent stays in the hospital when she was sick. Many times she appeared to be close to death, and the family steeled themselves for the worst.
"But she is so strong," Courtney said. "She kept fighting."
Every day of Lindsey's life she has had to take dozens of pills and other medications. Some nauseated her; others tasted bad. She would hide them in plants or in the radiator to avoid taking them. To this day, she said, she can't stand applesauce, which her parents used to help make the medicines more palatable when she was very young. They turned monthly visits to Albany Medical Center for treatments and check-ups of her viral load into family field trips.

Aside from her AIDS-related symptoms, which include fatigue and frequent bouts with pneumonia and other illnesses, Lindsey was born with a number of other physical challenges. She used to take steroids for her breathing problems, but she quit taking them a year and a half ago because they made her put on weight. Before she started purging, she weighed 260 pounds.
She was also born with mild cerebral palsy, which gives her an uneven, see-sawing gait. She didn't learn how to walk until she was 4 or 5, and still sometimes uses an electric wheelchair. Everyone at school knew who Lindsey was, she said, because she was "the black girl in the wheelchair."
Although she was a bright student, school was difficult for her, not only because she stood out but because she had to miss so many classes due to illnesses. She estimates that she probably has spent more of her life in hospitals and doctor's offices than in a classroom; many of her high school assignments were done over e-mail.
Lindsey learned quickly that her classmates would like her more if she put on a cheerful front, regardless of how she was feeling physically or emotionally. Only her closest friends knew that, starting at 13, she battled depression.
"If I got in a fight with my parents I would go to school just happy," she said, putting on a big, fake smile and a sing-song voice. "No one wants to be around someone who's a downer."
In adulthood, her demeanor is still usually upbeat. She is frequently smiling or giggling, even when what she is saying is dark or shocking.
She readlily admits to "masking," though, when it's pointed out. Then, her sunny smile fades. Sometimes, in unguarded moments, she bites her lower lip or chews her fingernails. She often sits with her hands tucked into her knees and her shoulders sloped in, as if she is trying to make herself smaller.
A few days before her birthday, while her best friend, Kealy Whiting, was visiting, she mentioned, nonchalantly, that she recently had to go to the emergency room because she hadn't eaten for 36 hours.
"Now I'm on Boost once a day -- well, it was supposed to be three times a day but I manipulated the doctor into changing it to one," she said, sounding at once triumphant and embarrassed by her deviousness.
A few touchstones, aside from her family and close friends, helped her get through her difficult childhood.
She has attended religious services at the Glens Falls Salvation Army since a friend brought her there in her teens. There, she has found acceptance and purpose.
She plays cornet in the band, helps serve meals at the Tuesday evening soup kitchen, and volunteers with the children's program. For the last few summers, she has worked as a counselor at the summer camp. She loves kids, especially her niece. Her energy for playing with Lela seems to never flag, nor does her patience.
One evening at Courtney's house, she hugged Lela close as she napped on her lap.
"I want a baby," she said, plaintively. But, although AZT therapy can now help prevent about 98 percent of maternal transmission of the virus to the fetus, she worries that even that small chance is too much to risk.
"It's just serious," she said. "It doesn't seem fair."
Still, she harbors no anger toward her own biological mother, who infected her.
"I just feel bad because she had to live with that the rest of her life," she said. Before her mother died from AIDS-related illnesses, when Lindsey was 8, she was able to have about three short visits with her. Her mother told her how pretty she was, and apologized repeatedly.
Every summer, from the first year it opened, Lindsey attended Double H Hole in the Woods camp.
It was such a relief, she said, to be around other children who understood what it was like to be sick and who weren't afraid of her illness.
Her pediatrician since she came to Glens Falls, Dr. Kathleen Braico, was (and still is) the medical director of the camp and is one of the most important influences in Lindsey's life.
"She has saved my life so many times," she said.
This time, though, Dr. Braico is trying to save Lindsey from herself.
Even if she succeeds at helping her control her eating disorder, though, she will only be her doctor for another two years. On Lindsey's 22nd birthday, a day she views with dread, she will have to switch to a doctor who treats adults.
"I'll just refuse to go to the doctor!" she said, in the teasingly rebellious voice of the teenager she no longer is.
Courtney said that Dr. Braico, who is both caring and a straight-talker, is one of the only people whose advice her sister will follow.
It pains Lindsey to feel that she is letting Dr. Braico
down and not fulfilling her potential.
After a recent appointment to check on her progress with the eating disorder, Dr. Braico explained that many AIDS babies were developmentally disabled.
"Why not me?" Lindsey asked.
"Because God was on your side, Lindsey," she said.
After a moment, she added, "But the IQ only takes you so far."

CONT.....