Minnesota Parent : stories

Features

The Marso family

Andy Marso was 22 and had just returned from a camping trip when he was diagnosed with meningitis.

Gimme an M!

By Andrea Langworthy

“Andy is one of the lucky ones,” Virginia Marso says of her son. Andy lost half of each foot, all of his fingers, and half of a thumb after contracting meningococcal meningitis. Damage equivalent to third-degree burns over more than one-third of his body’s skin required multiple skin grafts. Marso calls Andy lucky because most mothers she’s met whose children have been through this lost them to the disease.

Marso, a St. Cloud attorney and mother of three, returned from lunch April 28, 2004, and was told to call her husband immediately. Andy, a 22-year-old senior three weeks from graduation at the University of Kansas, was ill. He’d spoken with his mother the night before, saying he didn’t feel well. They agreed he should rest. When a friend checked on him the next morning, he knew something was wrong. Andy’s legs and arms were covered with purple blotches. Called pupera, they’re an indication of meningococcal meningitis which the local hospital confirmed with a spinal tap.

What is it and who’s at risk?
Dr. Richard Danila of the Minnesota Department of Health says meningitis is an inflammation of the lining of the brain caused by various viruses, fungus, bacteria, and parasites. The most severe type, meningococcal meningitis, usually seen in young people, is caused by the bacteria Neisseria meningitidis. Even though Mankato experienced an outbreak of seven cases in 1995, Danila says on average, there are 15–30 sporadic non-connected cases of meningococcal meningitis a year in Minnesota. One or two result in death. Nationally, The Centers for Disease Control and Prevention says meningococcal meningitis can cause approximately 1,000–2,000 cases a year.

Danila stresses anyone entering college should be vaccinated. Crowded conditions — college freshmen living in dorms and military recruits — make the two groups particularly vulnerable. Danila says a single case is usually spread through coughing, kissing, or sharing a cigarette.

Menactra, the trade name for the vaccine is recommended for 11–18 year olds and certain high risk children aged 2–10 who have other health conditions which make them vulnerable. “In general, with the vaccine, we are seeing some slight decrease [of the disease],” says Danila.

He cautions parents, “Don’t wait if your child has a severe headache or is vomiting; doctors and emergency room staff generally recognize the disease now.” The symptoms —sudden onset of fever, severe headache, and stiff neck — mimic the flu and are often accompanied by nausea, vomiting, sensitivity to light, and altered mental status.

The unlucky ones
Andy Marso was in unstable critical condition for eight days and then critical for three weeks. Because of dead, nonviable tissue (necrosis) that caused his extremities to turn black and curl up, doctors recommended amputation, starting with both feet.

“Nobody could tell us how long this would take,” says his mother who closed her law practice so she and her husband could stay in Kansas. Their younger son transferred to the University of Kansas to be with them and their other son took a 12-week leave from his job. “It was truly a family affair,” Marso says. While the family sat vigil for Andy at the hospital, his father, an analyst, perused the Internet to learn about meningitis and found the National Meningitis Association (NMA) website where stories of survivors offered encouragement.

Unfortunately, Evan Bozof’s isn’t one of those stories. Eleven years ago, the 20-year-old son of NMA cofounder and president Lynn Bozof was a pre-med honor student and pitcher on his school’s baseball team. His flu-like symptoms were misdiagnosed and by the time the doctor realized it, “We were fighting a losing battle,” says his mother. Even the amputation of all four limbs couldn’t save Evan.

Bozof and her husband learned about the preventative vaccine after their son’s death. To raise awareness of the disease, they formed the NMA, along with the parents of five other meningitis sufferers. Of those five children, three had died and two had quadruple amputations.

After Andy’s recovery, the association asked Virginia Marso to be Minnesota’s member of NMA’s Moms on a Mission program. These parents work in their own states, making sure the media gets the right information to the public when a new case occurs. “Something like this really galvanizes you,” says Marso. “Many of these kids die within the first 72 hours.”

The NMA also wants to spread the word about vaccination, which is covered by insurance and the Federal Vaccination Program for children 18 and under. Bozoff says the vaccine can protect up to 80 percent of those who receive it, but, of the young adults and adolescents who contract the disease, one of four will die. Another 20 percent will be left with long-term disabilities: amputation, kidney damage, hearing loss, or neurological problems.

“I wish I had known about it,” says Bozoff. “There is nothing worse than finding out a simple vaccine could have saved your child’s life.”

Virginia Marso didn’t know about the vaccine either, but Andy had contracted the B-strain — the one in five it doesn’t protect against. His mother says there is still work to be done on a vaccine to cover all strains of the disease. Upset that Minnesota doesn’t have mandatory vaccination and the Minnesota State Colleges and Universities System won’t support mandatory vaccination, she says, “People need to be educated.”

Andy was a National Merit scholar who received a full scholarship to the University of Kansas. A “sports nut,” according to his mother, after his recovery, and until recent layoffs, he used his journalism degree to fulfill his dream at a Kansas newspaper, working as a sports reporter. Now home in St. Cloud, he tutors elementary students in reading for Americorps and works part-time for the St. Cloud Times.
He used a wheelchair for a little over a year after his surgeries, learned to use a walker and then a cane. Now he has orthopedic prosthetics.

“Andy biked in Brazil last year and hiked the Swiss Alps in May,” his mother says, the pride in her voice making it clear: Virginia Marso is also one of the lucky ones.

Andrea Langworthy lives and writes in Rosemount.