LYONS — Lisa Saunders and her husband, Jim, might be getting a lot of fresh air and exercise with their ambitious goal of walking the length of the Erie Canalway Trail, but they’re hoping to get a lot more out of it.
For the Baldwinsville couple, it’s an opportunity to promote a cause dear to them: cytomegalovirus, or CMV.
Most people have probably not heard of CMV, but Saunders knows a lot about it now. It killed her daughter Elizabeth at age 16.
“It is the leading viral cause of birth defects,” said Saunders, as she visited the Trail of Hope in Lyons, where a ceremony will be held to honor the 222 infants who become disabled by CMV each year in New York.
About one in 200 babies are born with congenital CMV each year, but just a few become infected. Those infected can suffer birth defects that could develop into hearing and vision loss, developmental and motor delay, microcephaly (small head) and seizures. And some babies who don’t have signs of congenital CMV infection at birth may suffer hearing loss as well, possibly later in life.
Saunders’ daughter suffered hearing and vision loss, cerebral palsy, as well as severe seizures. She died 15 years ago from such a seizure, Saunders noted.
Saunders said she knew little about CMV when her daughter contracted it, but wishes she had known more about how she could have prevented it. CMV can be passed to infants and young children through saliva, such as shared food, and pregnant women can pass it to their unborn children. Saunders ran a licensed daycare out of her home before and after her pregnancy, but said she was not aware of the risks heightened in such a setting.
“They don’t hear that they shouldn’t kiss their toddlers on the mouth or share drinks,” she said.
The Saunders have been on a mission through her work with the New York Stop CMV Project to provide not only awareness, but see legislation passed to prevent the virus.
One step was taken in 2018, when the state Legislature passed a bill requiring testing for CMV in newborns with hearing impairments.
Another bill named for their daughter, Elizabeth’s Law, requires child care providers to be trained on the impacts and dangers of CMV and prevention and requires certain physicians to provide more information about cytomegalovirus in their offices. The bill, sponsored by state Sen. Pam Helming, R-54 of Canandaigua, has passed in the Senate.
It’s unclear if it will be passed by the Assembly in this session, which ends this month. The Saunders helped pass a similar law when they were living in Connecticut.
As for how they connected with Mark DeCracker and the local Trail of Hope, it came by way of their walks along the canal trail. They’d seen some Mural Mania murals while walking and Saunders reached out to DeCracker.
With an event marking National Trails Day coming tomorrow, DeCracker, who formerly worked with people with disabilities, invited Saunders to celebrate National CMV Awareness Month at the Trail of Hope, an accessible path near the Lyons Community Center.
After touring the 1/4-mile long trail, which includes over 10,000 flowers as well as vegetable and fruit gardens, a ceremony will be held at the Ribbon of Hope rock area, where Saunders will read a “Declaration of Women’s CMV Rights and Sentiments,” paying homage to the Seneca Falls women’s rights Declaration of Sentiments, followed by the placement of 222 rocks painted silver to honor the number of newborns disabled by congenital CMV in New York each year.
Saunders said among those expected to attend are Kristin Schuster of Canandaigua and her family.
“Kristin’s first child, Autumn, was born with congenital CMV in 2015,” said Saunders.
She said Kristin had never heard of CMV or that she was at increased risk for the disease because of her occupation.
“I was teaching in a pre-kindergarten inclusion classroom while pregnant with Autumn and was unaware of the dangers of CMV exposure,” she told Saunders in a piece she wrote for the online news source Patch.