Ryan White: My Own Story

Ryan White: My Own Story is about a boy who was diagnosed with AIDS at 13 years old, and how he and his family dealt with the hate and overall environment of his hometown concerning the disease. When Ryan White was born, he was diagnosed with a disease called hemophilia. He later contracted AIDS from a blood transfusion when he was only 13. Despite his disease, Ryan White just wanted to be like everybody else and live a normal life. He loved to hang out with friends and was a straight A student. His hometown of Kokomo, Indiana did not accept him because they thought his disease was contagious. The White family suffered from discrimination, which was very emotional and resulted in many hard times. Ryan was frequently in the hospital for many scans and tests, and in addition to the disease, his parents went through a divorce.
Ryan White was born on December 6, 1971 in Kokomo, Indiana. When he was three days old, it was confirmed that he had hemophilia, a disease in which the blood does not clot. Luckily, the U.S. Food and Drug Administration had

recently approved a new treatment called Factor VII. It was a treatment made from blood and contained the clotting ability that allowed healthy people to heal quickly from wounds. But even with the treatment, Ryan still had to be very cautious. He bled very easily and the most critical and severe bleeds occurred when a blood vessel bled in a joint. "A bleed occurs from a broken blood vessel or vein," White explained in his testimony before the President's Commission on AIDS. "The blood then had nowhere to go so it would swell up in a joint. You could compare it to trying to pour a quart of milk into a pint-sized container of milk." Even though he was in and out of the hospital for the first six years of his life, he tried his hardest to have a reasonably normal childhood.
In December 1984, when Ryan was 13, he had contracted pneumonia and needed surgery to remove a section of his left lung. After two hours of surgery, his parents were told that he had contracted the incurable disease of Acquired Immunodeficiency Syndrome, or AIDS, through his blood transfusions. The blood that Ryan had received was contaminated by the owner who didn’t know they had AIDS but donated the blood anyways. "I spent Christmas and the next thirty days in the hospital," White states in his book. "A lot of my time was spent searching, thinking and planning my life. I came face to face with death at 13 years old."
Ryan’s doctors told him and his family that he had six months to live, but White didn’t let that stop him from continuing to live a normal life, attending school, and spending time with his friends. "I hate the idea of anything that makes me seem sick forever. Maybe I have an incurable disease, but I don't have to be a permanent invalid," he said in his book Ryan White: My Own Story.
Unfortunately, White hadn’t even thought about the hate and fear he would receive in his home town of Kokomo, Indiana.

At first, individuals there insisted that there were no health rules for someone with AIDS to attend an ordinary school. Even after the Indiana State Board of Health set guidelines stating that it would be safe if White attended school, the principal, school board, and teachers tried to keep him out of school. They feared he would spread the ailment, even though it was known by that point that AIDS couldn’t be spread by casual contact. White and his mother took the case to court. Eventually they could compromise with their neighbors’ by having Ryan drink out of a separate water fountain, use a separate restroom, use disposable trays at lunch, and have him exempted from gym class. Even though these changes were made, twenty students were taken out of school by their parents to avoid any contact with

Ryan.
Ryan states later in his book that his townspeople’s fear of AIDS led him to become made fun of, and the target of some very hurtful rumors. People were told of him biting people, spitting on food, restaurants disposing of dishes he had eaten from and students defacing his locker by writing profanities and anti-gay slurs on his textbooks because at that time, AIDS was believed to be a disease primarily of gay men. A significantly additionally unnerving episode happened when somebody shot a bullet into White's home.
White states in his book, "I was labeled a troublemaker, my mom an unfit mother and I was not welcome anywhere. People would get up and leave so they would not have to sit anywhere near me. Even at church, people would not shake my hand." Since White and his family were conferred Christians, being rejected by their church hurt them the most. Ryan also wrote in his book, "I had plenty of time back then to think about why people were being mean. Of course, it was because they were scared. Maybe it was because I wasn't that different from everybody else. I wasn't gay; I wasn't into drugs; I was just another kid from Kokomo. … I didn't even look sick. Maybe that made me more of a goblin to some people."
Ryan’s situation became very publicized and was soon receiving a lot of media attention. He got thousands of letters of support, and met many celebrities and athletes that supported him such as, Michael Jackson and Elton John. He appeared on many television programs, including CBS Morning News, the Today Show, the Home Show, Entertainment Tonight, and Prime Time Live. White was also featured on the cover of the Saturday Evening Post, and People magazines.
As White became sicker, his mother had to miss more days from her work at General Motors which resulted in not being able to pay their medical bills. His sister, Andrea, was championship roller skater but had to drop her lessons because the family did not have the money for them. Ryan’s health was rapidly decreasing and was forcing him to be tutored at home. He wanted his family to move into a larger house, be financial stable, and just be accepted in the community. This thought became a reality when an ABC movie, The Ryan White Story, was made, describing his life. Ryan played his best friend Chad in the movie. "I wanted to make that movie because I was hoping that what we went through will never happen to anyone else," White wrote in his book.
In 1987, Ryan and his family moved to Cicero, Indiana, using the money from the movie, where they finally had found acceptance. "For the first time in three years," Ryan wrote in his book, "we feel we have a home, a supportive school, and lots of friends. … I am a normal, happy teenager again. I have a learner's permit. I attend sports functions and dances. My studies are important to me. I made the honor roll just recently, with two As and two Bs … I believe in myself as I look forward to graduating from Hamilton Heights High School in 1991."
Before White's story was known, there had been no reports of children who had AIDS. Following his diagnosis, White and his mom Jeanne ended up noticeably two of the world's best-known AIDS activists. Jeanne later established the Ryan White Foundation; it provides a comprehensive system of care that includes primary medical care and essential support services for people living with HIV who are uninsured or underinsured. "It was difficult, at times, to handle, but I tried to ignore the injustice," White wrote in his book, "because I knew the people were wrong. My family and I held no hatred for those people because we realized they were victims of their own ignorance. We had great faith that, with patience, understanding, and education, my family and I could be helpful in changing their minds and attitudes around."
Ryan sadly died on April 8, 1990 in Cicero, Indiana at 18 years old. He was a year away from graduating from high school. During his abruptly ended life, he accomplished more than many people who live long, healthy lives. His activism of concern for others with AIDS is still very well-known and praised today. "I've seen how people with HIV/AIDS are treated and I don't want others to be treated like I was," he said. A few months after White's death, Congress passed the Ryan White Comprehensive AIDS Resources Emergency Care (CARE) Act. The act looked for funding to improve availability of care for low-income, uninsured and under-insured victims of AIDS and their families.
Personally, I really enjoyed reading this book. Ryan White’s story is a very inspirational and moving one. Reading this book made me feel a little sad because of the way people were treating Ryan because of a disease he couldn’t do anything about, but getting farther into the book, I felt relieved and mostly proud of the way this boy handled the hate and fear. I can’t exactly relate to Ryan because I don’t have a life-threatening disease, but I do know that he was my age when he was going through this hard time. I know that if I was him back then, I wouldn’t be able to be brave like him and fight the system. This book was very eye-opening for me. The Ryan White Story is a sensational, true story; one that you will never forget. While reading this book, you feel like you are living with Ryan and his family.