Evan Bozof, a healthy baseball player and pre-med student at Georgia Southwestern University, thought he was suffering from a migraine when he called his mother one afternoon in 1998.
Just 26 days later, the 20-year-old was dead. Meningococcal meningitis had ravaged his body — both his legs and arms had been amputated, he had lost all liver and kidney function and seizures finally caused irreversible brain damage.
A vaccine for the rare, but deadly disease has been around since 1971, but his parents had no idea he could have been saved.
"You've already lost your child," said his mother, Lynn Bozof, of Marietta, Ga. "You can't go back and rewind the tape. It wasn't on the health forms. We didn't know and other parents did not know either. So we got started to raise awareness of the disease and its symptoms."
After her son's death, Bozof founded the National Meningitis Association and has been tirelessly working to promote universal vaccination and education about the disease that primarily affects otherwise healthy college students.
"It's relatively rare, but a scary disease," said Curtis Allen, a spokesman for the Centers for Disease Control and Prevention, which in June recommended that all children ages 11-18 and college freshmen be vaccinated for this highly infectious disease.
Meningitis is an inflammation of the membranes and cerebrospinal fluid surrounding the brain and spinal cord. In the past, most meningitis cases occurred in children younger than 5 years of age. As a result of the protection offered by current childhood vaccines, though, most meningitis cases now occur in young people between the ages of 15 and 24.
The cause of most cases of meningitis is a viral infection, but bacterial and fungal infections also can lead to meningitis. Evan contracted so-called "bacterial" meningitis, which is far more dangerous than the viral form.
There are 1,400 to 2,800 cases of bacterial meningitis each year in the United States. The death rate — around 13 percent — is more than 20 times higher than measles, the No. 1 childhood killer worldwide, according to the CDC.
Of those who survive, up to 20 percent can have serious medical consequences like deafness, neurological disorders and loss of limbs.
Those living in close contact in dormitories and lifestyle choices that compromise the immune system — like drinking and smoking — can make students vulnerable to the disease, which is transmitted by saliva, either by sneezing, coughing or kissing.
For bacterial meningitis, treatment must begin quickly, because, as in Evan's case, a delay of only a few hours can be deadly. Often, as in his case, it is initially misdiagnosed because of its flulike symptoms: high fever, headache, nausea, vomiting and a stiff neck.
"Evan was the picture of health," said his mother, "but that day, he didn't want to go to baseball and he never missed a game."
As Bozof checked in on Evan throughout the afternoon, his headache got worse and he began vomiting. She told him to go to the emergency room, "but they told him he had nothing to be concerned about and kept him overnight."
By morning, Evan was in the intensive-care unit with a 5 percent chance of survival. He fought the disease in three different hospitals. In the end, 10 hours of grand mal seizures caused irreversible brain damage and his parents took him off life support.
"After he died, we found out a vaccine was available and it had been recommended, but the information hadn't filtered down," said Bozof. Before Bozof began her work in 1998, there were no recommendations for vaccination.
The American College Health Association began to take notice of meningitis and in 1999 recommended immunization, according to Dr. Jim Turner, chairman of its vaccine committee.
Studies in 2000 revealed 100-125 annual cases among college students nationally, and about 6 to 12 student deaths a year, Turner said..
For the last three or four years, health officials have seen a decline in cases, according to Turner, but that could be because of natural cycles of bacteria and not immunizations efforts.
Scientists first saw outbreaks of the disease among young recruits in the military in the 1960s and they began vaccinating in 1971, according to Turner. "Living and learning in crowded conditions, drinking and smoking when they shouldn't be, it was a perfect lesson from the military."
About 10 percent to 20 percent of all people carry the meningococcal bacteria in their nose or throat, but 99.9 percent develop antibodies and never get sick, according to Turner.
Strains vary on a molecular basis from region to region, so a student exposed in Seattle might bring a different strain to a college dormitory in New York.
"Colleges have tremendous geographic diversity, and all these kids converge and live in the dorms, study together in the libraries and big lecture halls and party together in the frats," said Turner. "They spread the bacteria from one person to another."
In 2005 the CDC got on the immunization bandwagon when the vaccine Menactra was approved, according to Tom Clark, an epidemiologist at the CDC.
A conjugated vaccine, Menactra is effective for roughly eight years.
In June, the CDC expanded guidelines to recommend all children 11 to 18 and all college freshmen receive the vaccine.
As a result of grass-roots campaigns like those of the National Meningitis Foundation, public awareness efforts have taken hold.
A national college health assessment survey conducted by the American College Health Association in the spring of 2000 revealed that 24 percent of those questioned had been immunized for meningitis. By the spring of 2006, that number had more than doubled to 57 percent.
"In 1997, I bet you it was less than a half a percent," said Turner. "We've made stunning headway in terms of getting students vaccinated."
Since Evan's death and the work of Bozof's organization, 34 states have enacted legislation to require either education or vaccination. Some states ask parents to sign a waiver if their children are not vaccinated.
Still, in Vermont, where there are no state requirements for vaccination, the Middlebury College community still feels the pain of the death of 23-year-old Jason Fleishman, a neuroscience major and head of the ski patrol.
The popular student from Colorado had just skied down the "snow bowl" as part of his February 2004 graduation ceremony and was out to dinner with his parents when he complained of not feeling well, according to college physician Mark Peluso.
The next day, he had died of acute bacterial septicemia, a result of a meningitis infection.
"It came on like a lightning bolt," said Peluso. "It was so tragic. We had video of him that day going down the snow bowl smiling."
Fleishman had struggled with epilepsy, and during his senior year, he had openly discussed his condition with classmates at a fundraiser for the cause, according to college dean Matt Longman.
"His peers looked up to him as role model. He had one of the inspiring and optimistic outlooks," said Longman, "but his focus had always been on epilepsy. He was an amazing, persevering soul, and to be consumed by another illness, it really hit hard."
Fleishman is remembered on campus with an award given to a student who demonstrates, among other things, "college pride, academic passion and care of others," said Longman.
Evan Bozof, who wanted to be a doctor, has found his legacy in his younger brother Ryan, who has just completed his medical residency. "He's doing it for both of them," said his mother.
For her, nine years after the death of Evan, the pain never seems to go away, even though she tries to "channel the pain in a positive way."
"It sounds like such a long time, but when there's that hole in your heart, it's just like yesterday," she said. "In my mind I still have a 20-year-old who I want to talk to and I can't. The grief doesn't go away."