Ryan was born with hemophilia A, a rare, inherited disorder in which the blood system does not clot normally because of an inability to produce "factor VIII," a prosaically named protein related to this critical process. When a hemophiliac suffers a blunt or bruising injury to the body, internal bleeding often occurs, which causes damage to one's organs and can be life-threatening.
Although there is no cure for hemophilia, doctors treat the bleeding episodes with injections of factor VIII to help the clotting process along. But in the years (say 80's) before the threat of HIV/AIDS became widely understood, this substance was pooled and isolated from thousands of anonymous and untested blood donations. What no one knew back then was that every time a pediatrician administered this seemingly life-saving elixir, there was a real risk of administering an HIV-contaminated dose.
This was the way in which Ryan White became one of the first children, one of the first hemophiliacs to come down with AIDS/HIV in December 1984 at 13yrs of age and the Doctors predicted Ryan White had only six months to live.
"Mom, I Want to Go to School"
Doctors said he posed no risk to other students, as AIDS is not an airborne disease and spreads solely through body fluids, but AIDS was poorly understood by the general public at the time
and henceforth Ryan's path was not an easy one.
After the diagnosis, White was too ill to return to school, but by early 1985 he began to feel better. His mother asked if he could return to school, but was told by school officials that he could not. On June 30, 1985, a formal request to permit re-admittance to school was denied by Western School Corporation superintendent James O. Smith, sparking an administrative appeal process that lasted for eight months.
Battling school
Western Middle School in Russiaville faced enormous pressure from many parents and faculty to prevent White from returning to the campus after his diagnosis became widely known. In the school of 360 total students, 117 parents and 50 teachers signed a petition encouraging school leaders to ban White from school. Due to the widespread fear and ignorance of AIDS, the principal and later the school board succumbed to this pressure and prohibited re-admittance. The White family filed a lawsuit seeking to overturn the decision. The Whites initially filed suit in the U.S. District Court in Indianapolis. The court, however, declined to hear the case until administrative appeals had been resolved.On November 25, an Indiana Department of Education officer ruled that the school must follow the Indiana Board of Health guidelines and that White must be allowed to attend school.
The means of transmission of HIV had not yet been fully resolved by the mid to late 1980s. Scientists knew it spread via blood and was not transmittable by any sort of casual contact, but as recently as 1983, the American Medical Association had thought that "Evidence Suggests Household Contact May Transmit AIDS", and the belief that the disease could easily spread persisted.Children with AIDS were still rare; at the time of White's rejection from school, the Centers for Disease Control and Prevention knew of only 148 cases of pediatric AIDS in the United States.Many families in Kokomo believed his presence posed an unacceptable risk.When White was permitted to return to school for one day in February 1986, 151 of 360 students stayed home. He also worked as a paperboy, and many of the people on his route canceled their subscriptions, believing that HIV could be transmitted through newsprint.
The Indiana state health commissioner, Dr. Woodrow Myers, who had extensive experience treating AIDS patients in San Francisco, and the Centers for Disease Control and Prevention both notified the board that White posed no risk to other students, but the school board and many parents ignored their statements.In February 1986, The New England Journal of Medicine published a study of 101 people who had spent three months living in close but non-sexual contact with people with AIDS. The study concluded that the risk of infection was "minimal to nonexistent," even when contact included sharing toothbrushes, razors, clothing, combs and drinking glasses; sleeping in the same bed; and hugging and kissing.
When White was finally readmitted in April, a group of families withdrew their children and started an alternative school.Threats of violence and lawsuits persisted. According to White's mother, people on the street would often yell, "we know you're queer" at Ryan.The editors and publishers of the Kokomo Tribune, which supported White both editorially and financially, were also ridiculed by members of the community and threatened with death for their actions.
White attended Western Middle School for eighth grade for the entire 1986–87 school year, but was deeply unhappy and had few friends. The school required him to eat with disposable utensils, use separate bathrooms, and waived his requirement to enroll in a gym class.Threats continued. When a bullet was fired through the White's living room window (no one was home at the time), the family decided to leave Kokomo.After finishing the school year, his family moved to Cicero, Indiana, where he enrolled at Hamilton Heights High School, in Arcadia, Indiana. On August 31, 1987,there, the principal welcomed him with a handshake and encouraged the student body to engage in accurate and informative discussions about HIV/AIDS.
When the nation was still grappling with homophobia, unsubstantiated fears of how the virus was transmitted, and a great deal of prejudice towards a growing number of terribly sick individuals, Ryan White's case became a national antidote. During this period, Ryan served as an eloquent spokesman about AIDS to his classmates, journalists and, through the wide reach of television, the American public. He valiantly fought against a battalion of bigots who saw AIDS as some kind of divine retribution against gay men and intravenous drug users (two of the largest groups stricken with AIDS during this time). He also demonstrated how the national blood supply needed to be fixed so that every donation was tested for evidence of HIV. AIDS, he declared, is an infectious disease, nothing more, and it had the power to infect and harm any human being unfortunate enough to have contracted it.
A television film was made about his life, "The Ryan White Story," which aired on national television in 1989. Many celebrities and political leaders feted him, including Elton John, Michael Jackson, Nancy and Ronald Reagan and Donald Trump. But Ryan often said he would gladly trade in his fame for a clean bill of health and that his greatest desire in life was "to be a regular kid."
Death
By early 1990, his health plummeted. Ryan was able to attend the Academy Awards in Los Angeles in March of 1990 but a few days later, he developed difficulty swallowing and was rushed back to Indianapolis's Riley Children's Hospital. His respiratory condition worsened and he died on April 8, only one month before he would have graduated.
Ryan White is buried in Cicero, close to the former home of his mother. In the year following his death, his grave was vandalized on four occasions.As time passed, White's grave became a shrine for his admirers.In August 1990, four months after Ryan White's death, Congress enacted The Ryan White Comprehensive AIDS Resources Emergency (CARE) Act (often known simply as the Ryan White CARE Act), in his honor. The act is the United States' largest federally funded program for people living with HIV/AIDS. The Ryan White CARE Act funds programs to improve availability of care for low-income, uninsured and under-insured victims of AIDS and their families.
The Ryan White CARE Act was set to expire on September 30, 2009, but an extension was signed by President Barack Obama.
we should recognize the life of a courageous young man who helped reduce such ugly impulses. Despite being dealt two bad hands — hemophilia and becoming infected with HIV from the very medication used to treat his blood disorder — Ryan White made a lasting and noble difference in the world.
THAT'S HIS LEGACY..
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