Neo and Me

Here is what no one knows about Neo and me.

When Neo was three years old, I was asked to attend a meeting to discuss his health. A social worker would be there, and a nurse and a minister. The four of us would discuss what to do with a boy who had been born HIV-positive and was developmentally challenged.

It was seven years ago and most people like Neo, with HIV/AIDS living in the townships of South Africa, did not then have access to life-sustaining medications. For every person who received medications at that time, another seven or eight people who also needed the drugs in South Africa would go without them. In addition, little was known about how young children might react to these very strong drugs.

I listened as the minister moderated the discussion. 

Neo was terribly sick and it was uncertain whether or not he would survive. His mother was even sicker, but she had begun taking anti-retroviral medications. They lived in a one-room shack that flooded during the rainy season. They usually went hungry and sometimes went without a bed. Following a lengthy discussion, the minister turned to me and said, “So, what do we do? Does Neo get the drugs?”

For the first time in the discussion I spoke. I responded by saying it was obviously a very difficult decision, but I was an outsider and it wasn’t my place to offer an opinion.

“No. These are the decisions that we make every day,” the minister said. “If you want to understand what life is like here, you must say what you would do. We will all offer an opinion, but you will start.”

By that time in my work in South Africa I had met hundreds of people with HIV/AIDS. Only a handful of them were receiving medications. When I thought of Neo receiving the drugs, I saw the faces of all of the others who probably wouldn’t get the meds. To me, all of them seemed to have a better chance of surviving than Neo. I explained my rationale to the minister, the nurse and the social worker before concluding that, “If Neo receives medications, someone else who has a better prognosis than he does, will probably die. Because of that, I do not believe that Neo should receive the meds.”

Following my comments, the other three members of that consultation group each weighed in with their opinion and a recommendation was made. It would be inappropriate for me to reveal how the others responded. I also don’t know who, ultimately, decided to put Neo on anti-retroviral medications, but for much of the time since then he has been receiving treatment.

In some ways, Neo and his mother’s lives have improved since I voiced my opinion on his future more than seven years ago. They still live in one room, but generous donors have rebuilt the house. Individuals and nonprofit organizations have provided them with food, though they still often go hungry. But the medications have been far from miracle drugs for either the mother or son.

Neo’s mom has good and bad days. In addition to AIDS, she has been diagnosed with diabetes, depression and breast cancer. Neo has more bad days than good. Although he has grown tall, he is very sick and is in and out of hospital. Doctors say they have nearly run out of medical regimes to try for Neo. He has celebrated his 10th birthday and is in the fourth grade, but, as his teacher says, “Neo will always be in the fourth grade.”

Whenever I am back in South Africa I visit Neo and his mother. Neo’s mother says that Neo belongs to all of us who have assisted them over the years, and there have been many people who have assisted them. Neo is our son, his mother says. She worries about what will happen to Neo, especially if she dies. She wants us to take him to live with us in the United States.

Today, when I see Neo, he gives me a big hug and, at times, he clings to me. Sometimes he cries when I return to the U.S. He doesn’t know, nor does his mother know, that I’m the same man who would have denied Neo the medications that have kept him alive this long. All the support, and visits and hugs will never make up for that.

Written by Kevin Winge, Acacia Global board member