Courtesy of Amy and Ally Rooker

Every summer growing up, our family took a road trip from Michigan to Arkansas to visit our grandparents. In 2003, our route home included a stop at the Memphis Zoo to see Ya Ya and Le Le, panda bears who were on loan from China. We had chicken tenders for dinner and swam at the hotel pool. For sisters ages 10 and 8, it was a perfect summer day.

But the next day turned into a nightmare.

It started with headaches, then fevers, then vomiting in the parking lot of a fast-food restaurant. We spent an entire night at a hotel in Fort Wayne, Indiana, taking turns sprinting to the bathroom.

When we finally made it back to Michigan, our parents took us straight to the emergency department. The doctor initially thought it was the flu or a stomach virus. Our mom insisted that it was something more, that she had never seen us so sick. We were initially sent home, but our symptoms intensified. So after a few hours, we were back at the hospital.

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Two spinal taps later, we each had a diagnosis: meningitis, an infection of fluid and membranes surrounding the brain and spinal cord. Because further testing was needed to determine if it was viral or bacterial, we were confined to a room in the isolation wing and started on IV antibiotics.

Our memories of the ensuing days are a blur. More spinal taps, blood draws, CT scans and IVs. Infectious disease doctors, pediatric neurologists and nurses flooding in and out. In one of our cases, the infection progressed to encephalitis – inflammation and swelling of the brain. In the other, severe vomiting resulted in dangerously low potassium levels, which can lead to serious muscular, cardiovascular and neurological issues.

At one point, we awoke to a priest praying above us.

After four days of intensive care, we were well enough to go home. But our recovery was just getting started. One of us experienced a severe bout of depression along with significant personality changes as a result of the brain swelling that was caused by the meningitis and encephalitis. The other struggled to eat for weeks because the vomiting was so intense it caused esophageal damage and gastroesophageal reflux.

More than two decades later, it remains incredibly painful to revisit this time in our lives. We were sick beyond recognition. Our parents thought they might lose their daughters. The physical and emotional trauma we all experienced was agonizing at the time and has not fully healed.

But we feel compelled to speak out because of our nation’s health secretary, Robert F. Kennedy Jr. Because of incredibly ill-advised changes that Kennedy and his allies in government have made to vaccine recommendations, more children and families are now at greater risk of meningitis and other severe illness and disease. To us, that is unacceptable.

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Testing revealed that we each had viral meningitis. Ours was caused by enteroviruses, which in this case was not vaccine-prevantable. But we do have vaccines for several other potential causes of viral meningitis. That includes measles, which has come roaring back in our country after it was declared eliminated in the U.S. in 2000. But even as some children have died and hundreds more have been hospitalized, Kennedy still spreads lies about the highly effective measles, mumps and rubella vaccine. As a result, the U.S. may soon lose its measles elimination status.

Chickenpox, or varicella, can also cause viral meningitis. We have a strong vaccine for that, too. But Kennedy has claimed that this vaccine increases the risk of shingles – it does not – while his handpicked vaccine advisers have spread misinformation about the impact of a combined MMRV vaccine for young children.

We also have a terrific vaccine that protects against meningococcal meningitis, a particularly dangerous and potentially fatal form of bacterial meningitis. For years, the meningococcal vaccine has been routinely recommended for all children. But in January, the Department of Health and Human Services suddenly and inexplicably removed it and several others from the routine childhood vaccination schedule.

In response, the American Society for Meningitis Prevention warned just how risky this move is, noting that meningococcal meningitis is “a devastating and unpredictable disease that can kill in a matter of hours or leave survivors with lifelong disabilities, including brain damage, hearing loss, learning disabilities, or limb amputations.” We cannot fathom why our nation’s health leaders want children to have less protection from such a disease.

Our experience with meningitis changed our lives. As we got older, we could more fully grasp the gravity of what we went through, and from that understanding grew a deep appreciation for the work of public health. Our diagnoses required reporting to the local health department. Our parents received calls from each state we traveled through, asking them to document everywhere we stopped on our trip home to track exposures and prevent more people from getting sick.

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That is a big reason why we each went on to earn master’s degrees in public health and have devoted our careers to supporting this community. And while neither of us is a doctor or scientist, we know firsthand the importance of listening to those who are. Following the vaccine guidance of medical groups like the American Academy of Pediatrics, rather than Kennedy or his allies, can save lives. Our parents made sure we got all of our recommended vaccines as kids. We think every child deserves the same.

In putting this piece together, we re-read a journal kept during our recovery. Lines like, “I just want to be normal again” stand out. So do the passages explaining how a virus could cause a 10-year-old girl to not see, think or feel clearly. The reminders of a child who quit activities she once enjoyed and slept through class because her curiosity and focus were sapped broke our hearts.

No family should have to experience what we went through. That’s why we have vaccines, and it’s why we’re sharing our story. We’re under no illusion that Kennedy will listen to us. But we urge the rest of the country not to listen to him.

Ally Rooker has a master of public health in health behavior and health education from the University of Michigan School of Public Health and works in community health. 

Amy Rooker has a master of public health in epidemiology from the Columbia University Mailman School of Public Health and works in health communications.

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