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A Journey of Hope -- Inspiring Stories of Courage and Unconditional Love
Sheridan & Shane | Stacey | Jonathan | John | Lesley | Joshua The images and text on this page are reprinted with permission. They are from a collection of photographs by Katja Heinemann of HIV-affected and infected children who attended Camp Heartland, with reflections from the camp's director, Neil Willenson. The book is called "A Journey of Hope -- Inspiring Stories of Courage and Unconditional Love." Their stories will shock and move you. Fortunately, because of near universal testing of pregnant women in the U.S., fewer children are born with HIV than ever before. However, with the growing pandemic among women, particularly women of color, many children now have parents struggling with HIV. We also cannot forget that, globally, the pandemic has orphaned 15 million children and less than 2 percent of HIV-positive children in need of treatment are receiving it.  When Jonathan Swain was born in March of 1983, HIV was still considered "the gay disease." In the minds of the medical experts, HIV only infected people on the East and West Coasts. People from middle America like Denver, where Jonathan and his family lived, were considered safe. Jonathan was born 6 and a half weeks prematurely and given blood transfusions. At the time, the nation's blood supply was not tested for HIV, and Jonathan was infected with the virus. In the first two years of his life, Jonathan faced bouts of pneumonia, bacterial infections, pinkeye, along with countless, agonizing tests, including biopsies of the liver, lungs and lymph nodes. He was tested for numerous diseases, but never for HIV.  On a dark day in 1985, Jonathan's doctors finally determined he was living with AIDS. They told his mother, Shiela, that her young son would never see his sixth birthday. So Shiela put together a funeral announcement for Jonathan and prepared for his imminent death. For the first few years, Shiela kept Jon's illness a secret from all but her closest loved ones. In 1986, there wasn't much compassion for those with AIDS. Even as he suffered the daily pain of the disease and the uncomfortable side effects of the medicines, Jon still wanted to be a normal little boy. He made some friends and tried to have fun. One day while playing in the yard, he told all the other little boys, "I have AIDS!" They thought it was "pretty cool" and made sure they told their mommies all about it. In short order, Jonathan and Shiela were surrounded by controversy. So Shiela shared the family secret and worked to educate the community. Jonathan was the first child with AIDS in the country to go to public school without a court order, thanks to Shiela?s steadfast efforts at AIDS awareness.A book was published, My Name is Jonathan and I Have AIDS, and Jon visited Japan with his family to promote HIV education and prevention. He became something of a celebrity, the "Ryan White of Japan," an inspiration to thousands of children. Yet some people were mean -- even to a little boy. His neighbors told Jonathan not to swim in the swimming pool where he and Shiela lived. Some so-called "religious" people in their community kicked the Swains out of two churches that they had attended. They wouldn't let Jon play with their children. Not only did he suffer from AIDS, but he suffered the slings and arrows of ignorance and cruelty. Nevertheless, Shiela and her son had a good reason to celebrate: Jonathan did in fact live to see his sixth birthday. And somehow, he continued to grow and grow, just another kid with the same kind of hopes and dreams....  When he was 10, Jonathan came to Camp Heartland with his brother, Josh. For the first time ever, Jonathan felt totally free. He was accepted. He was with other children, like Ryan Chedester, who understood what he was going through. Like so many others, he had the time of his life. Months later, Jonathan joined me on our Journey of Hope programs, touring the country and encouraging young people to stay HIV free. After one particular speech, as I drove him to the airport, I asked him what his dream was. I expected him to say something about being a professional football player. But instead, without a pause, he said: "My dream in life is to live to be 20." It appeared that Jonathan's dream would be just that -- an unachievable dream. Medicines were very limited in the early 1990s. As a result, Jon lost five of his best friends to AIDS, including his first girlfriend, Sara. Imagine watching your friends die of the same disease that you have inside your own body. But ground-breaking medicines were soon developed. Protease inhibitors gave Jon and thousands of other people with AIDS renewed health and hope. Jonathan got healthier. He continued fighting ignorance, and he continued coming to camp. Yet, on occasion he still suffered the ill effects of ignorance. During his senior year in high school, he took a dip in a friend's Jacuzzi and swimming pool. Upon finding out that Jon had HIV, the father of Jon's friend had both pools completely drained and cleaned. HIV cannot be transmitted in a pool; the behavior was completely irrational. Yet these kinds of incidents follow nearly every young person with AIDS. Despite the misunderstandings, Jon tried to live the life of a 'normal" teenager -- except for the 20 pills he took each day, except for the monthly doctor visits, except for the painful medical procedures, except for the discrimination, except for the loss of his best friends to AIDS, except for the fact that he had to struggle every day to have some sense of comfort and acceptance. And so Jon moved forward with his life one day at a time. As he was nearing the completion of his senior year at Homestead High School in Mequon, Wisconsin, Jon's family and friends anticipated his upcoming graduation ceremony. His brother, Troy, and sister-in-law, Dana, flew in from San Francisco.They were joined by Jon's grandparents from Iowa. Taking the last of the few remaining coveted tickets were some of my friends and co-workers who had met Jon through Camp Heartland. As I watched Jon walk across the stage to receive his diploma, I nearly burst with pride. I cannot think of a young person who had overcome as many obstacles. A year later, one of my own dreams came true in December of 2002, when Jon served as a groomsmen at my wedding to Adria. At the reception, he offered a toast, speaking candidly about the impact that I made on his life. I was deeply moved, and flattered by his gratitude. But I also know that Jon is the strongest person I have ever met. Two weeks before Jonathan's twentieth birthday, I made a large framed collage of many of his photos, newspapers articles, and even his funeral announcement written by his mother. After seeing so many children succumb to AIDS, I was thrilled that Jon would meet his goal of "living to be 20. The collage now hangs in Jon's home in Utah, a testament to all of the issues that he has faced head on. He is the very definition of a survivor. Now 22, Jon takes his medicines, doesn't drink or smoke, studies, works hard, lifts weights daily and owns his own home. More impressively, Jon is married to a wonderful woman, Amber, and they have a new, healthy baby together, Jett Davis Swain. Although Jon was always optimistic, I don't believe he ever foresaw the day when he would be 22 years old, married and have his own baby son. There truly is hope! And, oh yes, he has a new goal in life: To live to be 80. Somehow, I know he'll make it. | ||
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