An Auburn native and his wife are walking across New York state to raise awareness of the virus that took their daughter from them 15 years ago.
Jim and Lisa Saunders, of Baldwinsville, have walked about 40 miles of the Erie Canalway Trail since April 2020. They began at the Erie Canal Park in Camillus and have covered Port Byron to Green Lakes State Park, Lisa told The Citizen. She and Jim will continue walking the trail's 360 miles a few at a time, gradually moving closer to its end points in Buffalo and Albany.
Highlights so far include the Nine Mile Creek Aqueduct and the Weighlock building that houses the Erie Canal Museum in Syracuse, Lisa said. But she and Jim aren't just walking the trail for the history. They're trying to raise awareness of cytomegalovirus, a common virus that infects more than half of adults by age 40, according to the Centers for Disease Control and Prevention. Most people who have it show no symptoms, nor even know they have it. And that makes what the Saunderses are trying to do about cytomegalovirus much harder than walking across the state.
As they're all too painfully aware, cytomegalovirus can be devastating when it infects babies prior to birth. That's what happened to their daughter Elizabeth, who was born Dec. 18, 1989. Along with vision and hearing problems, she developed cerebral palsy and debilitating seizures. After one on Feb. 9, 2006, she didn't respond. Sixteen years later, the virus she was born with took her life.
Before Lisa became pregnant with Elizabeth, she ran a day care in their home and volunteered in a church nursery. She believes that's how she was infected with cytomegalovirus, which she then passed to her daughter through the placenta. That ease of transmission, and the drastic birth defects that can result, are what she and Jim are trying to tell people about the virus, she said.
But it's hard for them — particularly mothers — to hear that, Lisa said. Preventing cytomegalovirus transmission means, among other things, not kissing their toddlers on the mouth.
"It's not a fun prevention method. People have to change the way they handle toddlers, and mothers of toddlers are at the highest risk," she said. "It's an inconvenient truth to tell moms."
Difficult as it may be, Lisa has felt compelled to raise awareness of cytomegalovirus by not just the loss of Elizabeth, but a dream she had afterward. She was surrounded by other parents of children born with the virus, who asked her why she didn't tell them their babies were in danger. Ever since, Lisa said, she and Jim have been been trying to do just that.
While living in Connecticut, where Jim worked as a scientist for Pfizer, Lisa advocated for a 2016 law that requires babies who fail hearing tests to be tested for cytomegalovirus, as it's the most common nongenetic cause of deafness in children. Early testing is important, she said, because it can help doctors determine whether a baby was born with the virus before potentially being infected later.
Since then, Lisa has pushed for laws that more proactively educate parents how the virus is transmitted. In New York, where she and Jim returned in late 2019, Lisa has met with Assemblywoman Linda B. Rosenthal about improving the current law, which merely requires the state Department of Health to have cytomegalovirus information on its website. The Connecticut law is similarly passive, she said.
"When I was in the hospital after my daughter was born I was given info from the CDC that people in day care are at higher risk, and my head spun out of control. (The Occupational Safety and Health Administration) says that employers are supposed to tell you about occupational risks," she said. "Now, 30 years later, women still aren't being told about the risk."
Lisa hopes her and Jim's effort to complete the Erie Canalway Challenge gives momentum to their push for cytomegalovirus awareness and legislative change. Even if it doesn't, though, the effort has already been warmly received by others, including a mother from the Buffalo area who painted rocks with #StopCMV for them to leave along the trail. Trail Works of Wayne County will also host a celebration at 1 p.m. Saturday, June 5, at the fully accessible Trail of Hope in Lyons. That day is National Trails Day, and June is National Cytomegalovirus Awareness Month.
"It's becoming a thing," Lisa said. "I hope CMV awareness will become a movement, like the abolition of slavery and women's rights, that will spread across upstate New York to the rest of the country."