THE BLOG

How Losing My Son to Meningitis Created a Community Dedicated to Awareness

04/23/2015 01:13 pm ET | Updated Jun 23, 2015

With Lynn Bozof

New York, N.Y. -- I first met Lynn Bozof, president of the National Meningitis Association (NMA), three years ago when I wrote for this publication, Meningitis: Give Kids a Shot -- Save a Kid's Life. I was particularly impressed with her dedication to doing something with the enormous loss she had encountered.

Lynn's son Evan was a junior at Georgia Southwestern University when he lost his life to meningococcal disease. He was a pitcher for his college baseball team and in excellent health. On a Wednesday morning in March 1998, Evan called Lynn to say he had a terrible migraine headache. When the symptoms got worse, Lynn suggested he go to the emergency room. Hours later, he was in intensive care.

Evan struggled to fight the infection for weeks. Lynn and her family were surrounded by doctors and medical teams, clinging to any indication that he might live. But one complication followed another - extremely low blood pressure, damage to the lungs and liver, gangrene of the limbs followed by amputation of all his limbs, seizures and finally, irreversible brain damage. Evan died 26 days later.

Lynn and her family were not aware that adolescents are at increased risk for contracting meningococcal disease and that it is potentially vaccine-preventable. Lynn, along with other families impacted, started the National Meningitis Association (NMA), an organization dedicated to protecting families by educating the public, medical professionals and others about the disease and its prevention.

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Evan Bozof Meningitis Awareness Day was March 17. Seventeen is significant as
Evan got sick 17 years ago - and his baseball jersey was #17. Photo courtesy of NMA.

Here is the story, as told by Lynn:

"My son, Evan, always wanted to play college baseball. When he graduated from high school, he took a road trip around Georgia with his father and brother to find a team that recognized his talent. They knocked on doors and asked for a chance to try out. It was a coach at Georgia Southwestern State University who saw Evan's potential and offered him a spot on the team.

Evan was ecstatic. He loved the school and loved his team. So much so, that when they put in a new baseball field, he went out there on the weekends to help build it. Evan was also an honor student. Everything was going perfect for him.

On a Wednesday morning during his junior year, Evan called to say he had a terrible migraine. His symptoms worsened over the course of the day. He was so sick, that he missed a doubleheader that day. Evan would never miss a game. I told him go to the emergency room. Hours later, he was in intensive care. For weeks, Evan struggled to fight the infection. The nurses found us a room to sleep, so we never left the hospital. His teammates drove 40 miles every day to see him.

We clung and searched for any indication that he might live. But one complication followed another - kidney failure, extremely low blood pressure, damage to the lungs and liver, gangrene followed by amputation of all his limbs, seizures and finally, irreversible brain damage. Evan died from meningococcal disease 26 days later. He was only 20 years old."

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Evan Bozof Meningitis Awareness Day. Photo courtesy of NMA.

"Every day is sad when you lose a child, and it can make you feel isolated, but the impact of losing Evan to bacterial meningitis went well beyond our family. The community shared our heartache and supported us. People we didn't know sent us food; the local florist sent flowers.

There was an incredible outpouring of support, especially from Evan's team. His teammates drove 40 miles to visit us. They told us stories about our son, like how he used to tutor other athletes in the dorm. After Evan passed away, they helped put together a memorial service for him. We scattered his ashes on the pitcher's mound, and each player took a turn raking the ashes. The school retired his jersey, number 17.

Evan was strong and healthy, but that's the thing about meningitis - one day someone is healthy and then the next they're fighting for their life. We didn't know that there was a vaccine that could have potentially protected our son, and I felt that there must be other parents out there who didn't know. I wanted to do something. That's why, along with four other parents, I started the National Meningitis Association (NMA)."

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Evan Bozof Meningitis Awareness Day. Photo courtesy of NMA.

"Over the thirteen years since NMA was founded, the organization has grown to include survivors and parents from across the country whose families were also affected by this disease. When talking to other NMA advocates I feel like I am reliving my own story of loss, but we also share good news about progress against this disease and how our communities have supported our mission to educate and raise awareness.

For my part, I am so grateful for how Evan's teammates and the GSW community continue to honor his memory. In the years since we lost Evan, they've been committed to raising awareness. For example, his best friend and former teammate inspired us to start a scholarship in Evan's name which supports other student athletes.

On March 17, 17 years after his passing, the Hurricanes played a game that was dedicated to the Hurricanes number 17, Evan, and meningitis awareness. A new banner with his number 17 on it was unveiled for the outfield fence. While my husband and I knew Evan as our child, his teammates shared stories depicting Evan as the young man he became. It made my family feel so grateful and overwhelmed that so many years later, Evan is remembered and missed.

Even after so many years, the community is still profoundly affected by the loss of Evan. It illustrates the importance of trying to prevent this dreadful disease. We can protect our teens through vaccination. The Centers for Disease Control and Prevention (CDC) recommends vaccination against four serogroups (A, C, W and Y) of meningococcal disease at age 11-12 with a booster dose at 16. However, about 20 percent of teens don't get the first dose and almost 70 percent skip the second.

There are also vaccines available to protect against serogroup B, which causes about one-third of all U.S. cases. I strongly encourage parents to ask for this vaccine to protect their teens against all strains.

We need to protect our children, friends, students and teammates from the disease that took Evan. Talk to a healthcare provider about meningococcal vaccination today."

The annual gala will be Monday, April 27, 2015 at the The Pierre in New York City. I will go as I do each year to show my support of this critical organization -- and of its dedicated founder, Lynn Bozof. Learn more here - and join us!

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Lynn Bozof is the president of the National Meningitis Association, before which she worked for Lockheed Martin Aeronautics. She lives in the Greater Atlanta Area.

The National Meningitis Association, Inc. (NMA) | Facebook
P.O. Box 60143 - Ft. Myers, FL 33906 • 1.866.366.3662 (1.866.FONE.NMA)

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