GRAND RAPIDS, Mich. (WOOD) — Stopped at mile marker 117, on their way up north for a Memorial Day weekend three years ago, Tom and Carol Vereecke jumped online. They had just talked to their son, who told them doctors had discovered his unborn baby had contracted cytomegalovirus (CMV).
The Vereeckes were frantically googling what CMV was.
“When we read about CMV, it was just totally devastating. You know, how did this happen?” Tom Vereecke said.
CMV is a common virus, and most adults with it never experience symptoms. According to the Centers for Disease Control and Prevention, by age 40, nearly half of U.S. adults have contracted it.
However, people with weakened immune systems and and babies born with CMV have serious complications. The Vereeckes read the dangers: brain, liver, spleen, lung and growth problems, along with hearing loss, the most common health problem for babies born with CMV.
“We’re really lucky because Brynn is on the mild end of it. And I wake up at night and think, ‘Those poor people that have got bigger challenges than what we have,'” Tom Vereecke said.
Brynn Rose was born six weeks early and spent 47 days in the neonatal intensive care unit. She had two blood transfusions before she was born and, doctors say, likely a few strokes in utero.
“I mean, you’re holding your grandchild for the first time and she’s got, um, oxygen and whatever else going on,” Tom Vereecke remembers. “At the same time, you’re like, you know, thank God she’s alive.
“Yeah. And because we, we probably, I guess — the first probably week, we’d get up every morning and dreaded, you know, did, did she make it? You know, because it was kind of touch and go, because she was six weeks early. And now to see her running around and, you know, being a toddler is just fantastic.”
Brynn is now 3 years old, and despite some challenges with hearing, eye muscles and speech, the Vereeckes said she is a spark of personality.
“Brynn is pretty amazing,” Carol Vereecke said. “We went to New York for Mother’s Day. I got four miles in walking with her around their house. Four miles. She walks all the time. She doesn’t ever stop. She loves her grandma.”
Tom Vereecke remembers the emotion they felt on the side of the road at mile marker 117. He said it was one of the few moments in his life he felt helpless.
There’s a reason those moments are so few: Typically, Tom Vereecke finds the positive in situations and makes the best of them. And eventually, he did — not only for his granddaughter, but for the 91% of women who don’t know about CMV.
“They have runs and they have, you know, you can do a road running event, you can do all of the forms for biking or running or doing a triathlon,” Tom Vereecke said of the CMV Foundation. “And I said, ‘What we’ll do is we’ll go from the ballpark to Rockford and maybe do something with the Corner Bar and then come back.’
“And then, I woke up in the middle of the night and I woke her [Carol Vereecke] up. I said, ‘Let’s do something bigger.’ She goes, ‘What’s that?’ And I said, ‘Let’s go to all 50 states in five years.’ And she goes, ‘You’re nuts. We’ll talk about it in the morning.'”
How did that talk go? In July, the Vereeckes will head out on a 12-state trip, starting in Brynn’s home state of New York.
When they are finished, they’ll have marked 20 states off their list, all while trying to raise funds for CMV awareness and spread the word to every state and every person.
“Flip the needle,” Tom Vereecke said about their mission. “The needle right now is 91%. I’d like to get that to zero. You know, 91% of pregnant women have not heard about it. So, then, that’s why we’re going to all 50 states.”
They said the last stop on their 50-state, five-year journey will be Michigan, and they’ll likely celebrate with a month-long ride through the state.
They are hoping communities across the country will help in three different ways. First, they hope people will follow their journey on their CMV website. They also want people to learn more about the disease and share that information with others to exponentially increase awareness. Finally, they hope people will donate. The couple is eating the cost of travel and donating all of the money they raise to the CMV Foundation.
“It’s a tough discussion, because you don’t want to be an alarmist and you don’t want to have pregnant women being paranoid about it. All we’re saying is: Know what’s out there. Know what you do to prevent it.”
The two have already raised over $7,000 and have partnered with local vendors like Vie13, who are supplying biking kits and gear that will put their cause front and center in every state.
But in every state and on every ride, there is one particular young lady who will be pushing them to continue, the same way she pushed them to start in the first place.
“She’s got this, this little spark to her,” Tom Vereecke smiled. “And, uh, and I think it’s going to carry her through life pretty well.”