Megan's story: Her battle with AIDS is lost, but her message lives on

Published 6/10/96

Megan and Jay Fox, at home two years ago. Although she had full blown AIDS when this photo was taken, Megan was asymptomatic and participated fully in school and other activities. They both hoped for the best in the NIH drug trials she took part in. (Photo by CHRIS TYREE)

By JANICE K. COLVIN
Community Editor

ROYAL OAK - Her skin was transparent, like fine alabaster, the tiny bluish capillaries webbed outward here and there, just beneath the surface.

Her hands, thin and cold, as she reached to hold mine.

Though she was supposed to be a big girl, she crawled into my lap. So light, like a handful of feathers. I wanted to hold her forever.

On Christmas Day 1991, this sweet girl, with soft wavy brown hair and sparkling eyes full of life and a smile like morning, watched her mother die of the same virus that also ran in her veins.

The virus, so small it must be seen with a microscope, with the name we all know - Human Immunodeficiency Virus, or HIV.

The virus that causes Acquired Immune Deficiency Syndrome.

The virus that had infected Megan Alyssa Fox while she grew in her mother's womb and which, on Monday, June 3, 1996, just a few days shy of her 12th birthday, finally killed her.

I only knew Megan for a little while, for a few brief moments it seemed, when she was still showing no signs of AIDS complications, just over a year ago. Then, the AIDS was being kept at bay by strict drug regime under a program at the National Institutes of Health in Bethesda.

There was still time, then, still hope that something good would happen, and Megan would survive despite the evil thing inside her.

She was, after all, a living miracle.

This, then, is Megan's story.

It was 1982. Like the rest of the world, Carol and Allan "Jay" Fox IV didn't know anything about HIV or AIDS. All they were concerned about was having a baby.

After 19 years of marriage and still no children, the only way they were going to have that baby was through an operation, to remove fibroid tumors from Carol's body.

The surgery was performed, and a blood transfusion was given to Carol. In the second unit of blood was the HIV, and Carol was silently infected.

Yet, the operation was a success, and Megan was born on June 15, 1984. A miracle - their miracle.

"For the next six years, we were as happy and proud as any parents could be," said Jay Fox.

Then, in November 1990, Carol's doctor found her white blood cell count was low. Tests were made. The day before Thanksgiving, Carol's doctor told her she had tested positive for HIV.

The next week, Megan and Jay were tested. Jay was negative, but Megan tested positive.

"We were just devastated. The question was, why us? Which we never got an answer for," said Jay.

Both Megan and Carol were put on the drug AZT. Megan was six at the time, and showing no signs of AIDS.

"Carol was afraid of children being cruel toward Megan," Jay wrote in a family biography. "So the fact they had HIV was kept secret."

In July 1991, Carol was diagnosed with lymphoma cancer brought on by AIDS. The disease progressed rapidly. Carol died on Dec. 25, 1991. She was buried in her childhood home of St. Michaels, at Olivet Cemetery, St. Luke's United Methodist Church.

Alone, now, with Megan, Jay decided to sell their house in Texas, quit his job and take Megan traveling. Travel they did, over 18,000 miles to Alaska and across the country, all that summer of 1992. At each place they stopped, Jay talked about what happened to Carol and how Megan became infected. They received only positive responses.

Finally, they arrived in St. Michaels, and Jay decided to stay for a while.

"We rented a little house across the street from Megan's grandmother and grandfather," said Jay. They would be close to Carol's gravesite. And the town was also within reasonable driving distance of NIH, where Jay hoped to enroll Megan in an AIDS research program headed by the renowned AIDS researcher Dr. Phillip Pizzo.

It was in St. Michaels, too, that he decided to go public with the information about Megan, based largely on the reception they had received from those they encountered on their travels.

Megan was enrolled at St. Michaels Elementary School for the 1992-1993 school year. There, Jay made his first public talk about AIDS.

A wondrous thing happened. The community enveloped them, supported them without condition.

"Unknowingly to me at the time, I was creating a support group of the entire community for Megan and myself. Had it not been for this support, I feel Christmas 1992 would have been a total nightmare," said Jay.

Both Megan and Jay became advocates for AIDS prevention, speaking out wherever they were asked, traveling to AIDS rallies, appearing on local television and radio.

Jay also became a strong supporter of HIV testing. "The only way to know that you are not infected with HIV is to be tested," he said.

Megan began treatment at NIH in January 1993. There, they met other children and parents undergoing the same trials the Foxes faced. They supported each other. Megan made many friends.

But the trips soon were doubly painful, as those friends, one by one, slowly died of complications brought by the virus. Soon, Megan was the last survivor of two different drug studies at NIH. She remained alive - still a miracle.

In St. Michaels, Megan lived the life of every young girl, riding her bike, playing with her cat, Tiger ("a she cat" Megan had said), going to school (math was her favorite subject), reading and writing.

The drug regime continued, with some drugs causing harsh side effects. Through it all, Jay monitored what was happening to Megan, helping doctors adjust her dosages to ease effects, and hoping to keep her free of symptoms, just one more day, one more month, for as long as it took to find a cure.

"These drugs people take for AIDS are called retrovirals and they are very toxic. Essentially they are an oral chemotherapy," said Jay, and hard on the stomach. Megan took it in stride, though, the drugs were just a part of life now.

The summer of 1993 was spent traveling again, with Megan and Jay returning to Alaska and the Yukon Territory. But by the time they returned, Megan had developed full-blown AIDS.

There was no traveling after that. They stayed close to home, as Megan weakened, needing more continuous medical treatments and transfusions.

The sparkle stayed in her eyes, though, and her love of life stayed strong. She continued with her school work, even having a tutor come in when she could no longer make it in to school. During this time, her father remarried, and Megan had a new sister and brother. The family moved to a different house.

Yet the slow days grew more painful. When the end did come on that cool spring day, it was at home, peacefully, surrounded by those who loved Megan and whom she loved.

The silver casket lay open at the front of St. Luke's Church. Family and friends lined the pews and wept for the little girl who was inside it, whose battle with the virus was now over. She would soon be next to her mother.

It was hard for all present to understand the reason for something like this, said Pastor Sandra Steiner Ball, and in the last few months even Megan questioned why.

But Megan was an intelligent and determined young lady, she said. Her very life was an example, a gift to all. "We are thankful for even the short time we had with Megan," said the Rev. Steiner Ball.

If there was one goal Megan had, Ball said, it was to be a teacher.

"In a great and very important way, Megan reached her dream of being a teacher," she said. As Megan traveled with her father through 44 states and seven provinces of Canada, she taught by telling her story of AIDS "so that others might be spared the battle that she was fighting." She taught by participating in the NIH program "that they might learn something to help her and others fighting AIDS."

"Megan was a teacher, all right," Ball continued. "She taught us how important it is to love and care for other people and how important it is that each individual, no matter who they are or how old they are, has something they can contribute to make this a better world. Individuals can and do make a difference."

"Megan made a difference."

"For the sake of your children and the rest of the world, write your congressional representatives and senators and tell them a cure must be found by the turn of the century or the children of today could very easily be the last generation on Earth." - Speech given during World AIDS Day 1994, Jay Fox