What every parent should know about West Nile virus

Segment about the late Cody Hopkins aired on CBS National News on Sun., Aug. 25, bringing much needed awareness to a misunderstood issue

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Young Cody Hopkins with his mother, Lacey Hopkins Lashmet.

Twenty years ago this summer, on July 28, 1999, the first outbreak of West Nile virus in the United States killed seven in New York City. Only the elderly suffered critical brain swelling marking onset of the disease, which led to a common misconception, that this was an older person’s plague.

Even on the History Channel’s website today, it states West Nile virus “causes flu-like symptoms and can be deadly in both the elderly and small children.”

Iowa native Rosalee Barber Kirby knows just how wrong this assumption is. On weekends, she spreads the message while barrel racing.

On Aug. 15, a CBS National News crew flew to Texas. They sat with Rosalee and her daughter as she retold her grandson Cody Hopkins’ story, explaining in painful detail why she has made the West Nile virus her mission.

“They moved all the furniture out of my dining room,” Rosalee said. “And we did an interview.”

Tiger mosquito

Rosalee graduated from Ames High School in 1975, but she spent a good portion of her childhood on her aunt and uncle’s farm, Paul and Ethel Jackson’s of rural Clio, Iowa. Rosalee’s father, Irvin Barber, was born and raised in Wayne County.

“I spent my summers there,” Rosalee said. “I loved it. That was the favorite time of my life.

“They had everything: peacocks, pigs, a horse, chickens—I remember going out and getting chased by roosters. In the wintertime, it was so cold, and they had that one little wood heater. The first time I ever drove a tractor was at my Uncle Paul’s.”

But the highlight for Rosalee was riding that horse. It began a lifetime passion that would become essential to the family’s recovery when tragedy struck in a most unexpected and cruel manner.

“I’ve talked to news people after climbing off the back of a horse,” Rosalee explained. “Somebody will call and say, ‘A news crew is on its way!’

“I’ll answer, ‘I smell like a horse—I hope they don’t mind.”

Her grandson Cody was 13 years old when a tiger mosquito, a genus native to the tropics of Southeast Asia, bit him.

“He was very active, very healthy,” Rosalee said. “There are a lot of myths out there about elderly people being most susceptible. It’s not true. Cody was athletic—he played football and baseball, he rode bulls. He was an outgoing and personable young man.

“I don’t believe he ever missed a day of school, because he used to ride to school and back home with me every day. He was my little compadre.”

Rosalee is a third-grade math and science teacher in Lexington, Texas.

Cody’s mother, Lacey Hopkins Lashmet, was on vacation and stranded with no way back until after her son’s symptoms began.

“Cody decided he wanted to stay with his uncle while his mom was gone,” Rosalee said. “Well, on a Thursday night, the coach called me after one of his football games.

“He said, ‘Cody doesn’t remember how to get to his uncle’s house.’

“Cody had been there a million times—I didn’t know how he could forget that. I went with my son to pick up Cody, and we took him home. Well, my daughter-in-law noticed Cody had a rash. She thought maybe he was having a reaction to laundry soap.

“He got up on Friday morning and he couldn’t remember how to put his shirt on.

“We just thought Cody was being silly. They got his shirt on and sent him to school. Then, I was in the middle of math class when my phone rang—my family knows not to call me while I’m teaching.”

West Nile virus

It was Rosalee’s daughter-in-law. The school had called them and said there was something wrong with Cody, and the family was at the hospital. The doctors took blood and urine samples, and preliminary tests showed nothing obviously wrong. But Cody could barely speak.

A spinal tap revealed white blood cells in the cerebral spinal fluid.

“So, the doctor said, ‘Listen, we’re not going to even mess with him—we think maybe you might be looking at West Nile.’”

The doctor sent him to the emergency room at Dell Children’s Medical Center in Austin, where they asked Cody if he recognized his family members. The last word out of his mouth was his grandmother’s name.

Cody was confused. He tried to wear his bedsheet as a shirt. His family asked what he was doing, but Cody could not answer.

“The doctors said they were going to load him down with steroids and shut down his immune system,” Rosalee said. “My daughter got back home on Sunday. Cody’s stepdad is a vet tech, and he said, ‘You know, he’s showing the same signs as a horse that’s got West Nile.’ They requested [the doctors] perform a West Nile test on him.

“Well, we waited three days for the results, and during that time, Cody had a brain bleed. It started getting worse and worse. Every time they did a CAT scan, they’d see more bleeding in the brain.

“What had happened in actuality was the virus had broken the blood-brain barrier. It moved to the hypothalamus.

“After three days, the doctors came in and said, ‘He’s got West Nile. Now we need to reverse what we did, and we need to try to get his immune system back up.’ They said they had this new drug, Interferon, but they weren’t sure how Cody would react to it.

“The following Sunday, early morning, about four o’clock he had a heart attack, caused, they believe, by the Interferon.

“At that point, he lost all brain function. You’re talking about a total of nine days altogether. So, they called his family in—they put us all in a room, as a group. They told us there was no brain activity. ‘We can leave him on the machine, or you can choose to take him off the machine—his brain is never going to come back.’

“We decided we couldn’t do that to him. My husband and I went up, and we held Cody, and they took him off the life support.

“It was real strange, because the room was warm. The doctor stood behind us, and we were watching the monitor. The room just went cold. We looked at each other, and the doctors said he was gone—it happened that fast.”

Fighting back

Rosalee wanted answers. Even a prestigious institution such as Dell Children’s Medical Center was in the dark.

“I’m really protective of my family. I wanted to know why Cody did not get tested for West Nile virus right away. They shut down his immune system before they knew what was going on.

“I can’t blame Dell, because Dell was going by what the CDC says.”

The Centers for Disease Control and Prevention is based in Atlanta. Yet the problem goes beyond even a federal organization such as the CDC, because they are, in turn, tethered to the whims of the pharmaceutical industry, which spends more money on advertising than research and development.

Preventing disease is more complicated in an open, world economy, as opposed to the relative isolation of the past. As well, modern travel allows contagions to spread more quickly.

At the same time, information can be shared more quickly. In Rosalee’s case, she was able to find solace in the West Nile Virus Support Group on Facebook.

“It’s staggering how many people are on that,” Rosalee said. “The CDC’s numbers are skewed. [In my opinion] they’ve turned a blind eye to it. I called my State Senator Lois Kolkhorst.

“I said, ‘Here’s the deal—my grandson passed away, and I’m fighting mad.’”

One of Kolkhorst’s aides informed Rosalee the Texas Task Force on Infectious Disease would be meeting the following week. Rosalee accepted an offer to speak. While there, she met Dr. Kristy O. Murray of the Baylor College of Medicine in Houston, and Dr. Peter Jay Hotez, the Dean for the National School of Tropical Medicine at Baylor.

“I’ve spoken with [the Texas Task Force] twice now, and they agree,” Rosalee said, “there’s a problem with the numbers, and a vaccine really needs to be made.”

Hotez and Murray invited Rosalee to Baylor to show her their research on West Nile virus.

“So, we go to Baylor. They open the drawers. They’ve got the vaccine there. I said, ‘Are you kidding me?’

“Hotez said, ‘We need someone who’s not afraid to fight.’

“Murray said, ‘It’s still in phase one because we can’t get the funding.’

“Then I was really on the warpath.”

Baylor provided Rosalee with the entirety of its research—four inches thick of typing paper.

On the West Nile Virus Support Group, Rosalee found victims who did not get tested until a year after contracting the disease. One of the people she met with West Nile was Robin Kennard, the daughter of late Louisiana State Representative Donald Ray Kennard.

Robin worked for the ADA, but says she lost her job because of the disease.

“Once you get West Nile, it doesn’t go away,” Rosalee said. “They want you to believe it’s like the flu, but it affects you neurologically. Robin was in the same situation—it took forever for someone to finally diagnose her.”

Crows

At the Bronx Zoo in 1999, exotic birds began to die. Dead crows littered the streets. Throughout history, birds have been a warning sign of a coming plague.

In Kansas in 2019, because of heavy rain and flooding, mosquitoes have been more abundant this spring and summer, leading the Kansas Department of Health and Environment to issue a West Nile virus advisory.

“If you see dead birds around, they strongly advise you to package them up and send them to Baylor to get tested for West Nile,” said Rosalee. “A woman’s daughter from Florida contracted the disease when she was 15, and almost exactly a year after her diagnosis she died.

“Then I had a lady from South Dakota get ahold of me—Jessica Howling Wolf—she’s a Native American and lives on a Reservation. It took them a year to diagnose her son Benny. He’s now five. He can’t walk, he can’t talk, he can’t feed himself because of brain and neurological damage.

“So, I had a reporter from South Dakota call me for a story about Benny.

“And he said, ‘I have to tell you something. I’ve never had my heart broke so bad as the day I sat and watched Benny go through physical therapy.’

“People get brain fogs, they can’t remember anything; it’s devastating. It’s with you for the rest of your life.

“I had another woman call me. She said her husband had West Nile, and two weeks short of a year the hospital kicked him out—his insurance ran out. She said now the hospital is suing them for a million dollars: ‘I’m trying to take care of my husband. I’m trying to work and pay my bills.’ They don’t have money for a nurse. She ended up losing everything.

“The problem is, the CDC is telling doctors not to test for West Nile, because there’s only a one percent [chance of contracting it], you don’t need to bother with it. It’s a $3.50 test. You get charged $1,500.“We’re pushing for doctors to test for it, and to get that vaccine out.

”Before Cody passed, it had been five years since Rosalee had ridden a horse in a rodeo event. She got back in the saddle and used the opportunity to educate people about West Nile virus.

“I tell other barrel racers that we give our horses West Nile vaccine every year, because it’s almost 100 percent fatal in them. They’ve had it out for horses since 2001. You can’t get a vaccine for a human? I don’t understand this. I was told the pharmaceutical companies don’t believe it would be profitable enough.”

Rosalee Barber Kirby rides Ace, spreading her message about West Nile virus on the racing circuit.

One Man Can Change the World

Signs of West Nile virus vary from person to person, as does severity, but generally it begins with a rash. Incubation ranges from two to 14 days.

A few weeks before Cody got sick, he was talking to his best friend. Perhaps it was a premonition.

“Do me a favor,” Cody said. “When I die, tell my mom to put my ashes in a Teddy bear, so that whenever she misses me, she can hug me.”

At Cody’s funeral, his best friend told the family this story for the first time. They played “One Man Can Change the World” by rapper Big Sean, and that has become Rosalee’s motto; the musician wrote the song after his grandmother died, one of the first black female captains in World War II, a Detroit police officer, a teacher and a counselor.

“Cody and his mom got in a little argument,” Rosalee explained. “As they were driving along, Cody told his mom, ‘You need to listen to this song.’

“She said, ‘We don’t listen to rap music—we listen to country music. I don’t want to hear it.’

“‘No, Mom, you’ve just got to listen for a minute—just listen to the words. It’s called, ‘One Man Can Change the World.’ So, that’s what we tell everybody—Cody’s not here to do that, but we are. And we’re fighters. We’re Barbers. We’re not going to take it.

“Well, the CDC doesn’t like me, because I called and talked to them. They said, ‘Not enough people have died.’

“I replied, ‘No—here’s the deal—my grandson died. That’s one too many. I will fight you on this.’

“We’re taking a stand. We’re trying to get in front of Congress. I’m a teacher, so I would have no problem with it—I talk in front of kids all the time. Dr. Hotez has been in front of Congress twice now trying to get funding for the vaccine, and he’s been turned down twice.

“He told me, ‘They say they don’t have it in their medical budget, so they just blow me off. But you can bring the human aspect.’

“I was angry at God for a year. I said, ‘How could you take my grandson? How could you do that? I’ll never get to see him walk down the aisle. I’ll never get to see him graduate.’ Then, one day, it hit me—God always gives us a vision, and Cody’s theme song was ‘One Man Can Change the World.’

“And we’re going to make that happen. If we save one life, it’s worth it. We’re fighting an uphill battle, and we’re not going to back down until we get that vaccine out there.”

CBS News

After years of struggle, on Sun., Aug. 25, Rosalee and her daughter Lacey found themselves on CBS News. The segment begins with a scene of authorities spraying for mosquitoes in El Paso. Every morning, crews fog streets from the back of pickups in the West Texas town.

“We put the public in danger if we don’t actually address these concerns,” Matthew Montes, City of El Paso Environmental Services, told CBS.

West Nile has been confirmed in 26 different states, including Iowa. In 2018, 2,647 cases were reported in the United States, along with 167 deaths.

Rosalee and Lacey’s hard work paid off that Sunday, as the CBS news crew set up in her dining room. None of this would have happened if Rosalee and her daughter had not fought.

“It shatters me,” Lacey told CBS’s Mireya Villarreal, describing what it feels like when she hears of yet another victim of the disease. “The thought of one more person being taken by West Nile when there’s a way to prevent it just sickens me.

“Just one little bug got the best of him. He was a tough, gritty kid, and definitely not what we expected to happen.

“It’s extremely dangerous. And I think people take it for granted. People make jokes about it. To get that happy, healthy, great kid, I was willing to do whatever it took.”

Though it was only a two-minute segment, it was a giant leap forward.

The clip can be viewed at www.cbsnews.com/video/west-nile-virus-reported-in-at-least-26-states/. As CBS’s Mark Strassman explains, “Scientists are working on a vaccine, but a lack of funding has slowed its development.”

Taskforce

Recently, Rosalee returned to Iowa to attend a funeral with her husband. His sister-in-law asked Rosalee if they could talk about West Nile virus—one of her coworkers, a teacher, had contracted the disease.

Rosalee got another call from a cousin who lives in Iowa. The cousin’s mother-in-law and sister found out they had West Nile virus.

“People don’t understand,” Rosalee said. “It’s here. Whatever you can do to keep mosquitoes away, use it. If you’re outside, you’re in danger.

“But, even better, instead of worrying about chemicals in bug sprays—there is a West Nile virus vaccine. But Congress doesn’t want it—the pharmaceutical companies just can’t see a profit in it.

“We’re hoping CBS News will help launch us in front of Congress.”

Along with her daughter, they are a two-woman taskforce against the public’s ignorance of West Nile, and against corporate indifference. A vaccine is readily available for horses, but Lacey’s son Cody Hopkins—who passed at 13 from West Nile—was not provided the option of receiving the preemptive treatment, though it is in existence at the lab at Baylor College of Medicine in Houston.

Cody had two older brothers. They had to watch him die too young.

“For about a year, we just fell apart,” Rosalee said. “Nobody wanted to talk about it, because we’d always break down. You know that wound’s never going to heal. Once we contacted State Senator Lois Kolkhorst and became active in this cause, we rebuilt our relationship, but it’s different now. We don’t take life for granted. Even if we’re mad at each other, we’ll make sure and say, ‘I love you.’

“Now, we’ll get together and just talk about Cody—how he used to be. For example, Cody and I used to scare each other all the time. He’d hide, and I’d walk in the kitchen and he’d grab my leg from under the table.

“We deal with it by talking about it a lot. Trying to help other people is another release. That’s how we heal. One man can change the world.”

Almighty dollar

Every time Rosalee barrel races, she wears her emotions on her sleeve; there is always information about Cody and West Nile printed on her shirt.

“I took a picture of my grandson,” Rosalee said. “And I took a picture of my horse, Ace, and laid them next to one another. I said, ‘Here’s the deal guys. I love my horse. I do. He’s my therapy horse. I give him a vaccine every spring, but my grandson didn’t have that choice. I would choose my grandson every time.’

“It’d be an annual vaccine, like a flu shot. It wouldn’t be mandatory, but it’d be available.

“I have doctors say after I talk to them, ‘We’re going to help you out.’ Then I don’t hear from them again. I don’t know if their hands are tied, or what.”

When asked if a parent could have their young children vaccinated for the disease, Rosalee answered tersely:

“Nope. The FDA will not approve it yet, because they don’t have the funding. If I could say something to the pharmaceutical companies, it’d be, ‘I promise you’ll make money.’”

That is the biggest carrot that can be dangled.

“I feel bad it all comes down to the almighty dollar,” Rosalee added. “I’m sad the government is putting people off to the side and that the CDC is totally ignoring the fact West Nile is here, and it’s way more than one percent [of the population affected].

“If you go on Facebook’s West Nile Virus Support Group, you can read story after story—people who’ve been diagnosed and are living with the disease.

“I get phone calls all the time. A woman said, ‘I’ve got a story to tell you. My husband got West Nile. He was in New York at a seminar. He went to the bathroom, got back in his car, and he couldn’t remember how to use his phone.’

“A man in San Antonio pulled me aside. He said, ‘I need to talk to you. I survived the Vietnam War. I came back here and got bit by a mosquito.’ He can’t use his left arm anymore. He ended up having one leg amputated, all because of West Nile.

“A lot of them are so weak. I don’t know how many have said, ‘We’re thankful you’re out there fighting for us, because we physically can’t.’ People get divorces from it, because they can’t deal with a sick spouse. It’s like cancer, but sometimes you can heal cancer—you can’t heal West Nile.”

Like influenza, West Nile is a zoonotic disease, which means it can spread between more than one animal, including humans. It gives a virus an evolutionary advantage.

Testing has discovered West Nile virus in squirrels.

“And it’s not just in the southern states,” Rosalee said. “It’s South Dakota, Nebraska, Iowa. It doesn’t favor just warm weather.

“We’ve got to make people aware, and the CDC needs to step up and fix things.”

Vaccine

Every year, the family holds a bull riding event in Cody’s memory. In the past, the rodeo has taken place in Austin, Texas. On Oct. 5, Medicine Lodge in southcentral Kansas will host the fundraiser. Eventually, it might land in Iowa; Cody was born in Boone.

“We decided if we were going to raise awareness, we had to go beyond Austin,” Lacey said. “Someone suggested we try another state, that we put this awareness on the move.

“The anticipation killed me,” Lacey said of waiting for CBS News to tell her son’s story. “I wanted them to talk most about the lack of funding for vaccinations, which is our main goal, because there are still people out there battling this disease. We want to talk about Cody, but it’s more important to spread the message about lack of funding. Big pharmacy doesn’t see the money in a vaccine.”

For Lacey, it was surreal to finally see her mother’s dining room on national news. The broadcast was delayed several days. It seemed like forces beyond their control were fighting back against the progress.

“It’s humbling,” Lacey said. “We’re hoping we’re one step closer to standing before Congress and getting that vaccination available.”

Cody Hopkins, who contracted West Nile virus at the age of 13.