Kimberly Schneider will never know what caused the death of her 4-year-old daughter, Livy.
What the Kenosha mom does know is that she and her husband, Brian, will spend their lives trying to brighten the lives of other families.
“We have decided to embrace our loss and become ‘angel parents,’” said Kimberly Schneider, 30, in a recent interview at the News.
In the early morning of March 6 of last year, Schneider discovered that her daughter Olivia, who went by Livy, had died in her sleep. Following a thorough investigation that ruled out possible causes, such as illness, injury or disease, her death was deemed “sudden unexplained death in childhood.”
According to the SUDC Foundation, SUDC is the category of death in children between the ages of 1 and 18 “that remains unexplained after thorough investigation, including an autopsy.”
“We talk about it as a category of death that eludes us,” said Laura Crandall, president of the SUDC Foundation. “The majority of cases are toddlers, and it tends to be sleep-related.”
SUDC is very similar to Sudden Infant Death Syndrome, which is used to describe unexplained deaths in infants up to the age of 1. Because of their connection, SUDC began in 2001 under the SIDS umbrella, becoming an independent foundation in 2014, explained Crandall in a recent phone interview.
In 2017, 389 children were affected by sudden unexplained death. Overall, SUDC occurs in about one out of 100,000, and among children ages 1 to 4, SUDC is the fifth leading category of death.
To deal with the loss of their daughter, the Schneider family established “Livy’s Legacy: Filling in the Dash,” to support families and children in Kenosha and raise funds for the SUDC Foundation. “Filling in the Dash” refers to the fullness of Livy’s short life and enriching the lives of others, said Schneider.
“I’ve learned this is my life and with that we’re going to help others,” Schneider said.
Livy Schneider was one of those 4-year-olds.
Born Feb. 5, 2014, Livy was a perky child who was wise beyond her years, said her mother.
“She was a whirlwind, that child.” She loved Disney Princesses and hanging around engine parts in her grandfather’s garage. She had a great sense of humor and, for a 4-year-old, a good sense of self, said her mother. “She had her own personality, her own agenda.”
Livy’s other loves included swimming, and baking and shopping with her mother. “She loved to learn and books were huge for her.”
When Livy died there was an outpouring of financial support from the Kenosha community. The help was welcome, Schneider said, “because you don’t plan (financially) for the funeral of a child.”
The extra money, along with funds from a Go Fund Me account in Livy’s name, formed the seed funds for Livy’s Legacy.
“We realized we had enough money for ourselves and wanted to provide for other families and children who don’t,” Schneider said.
In the past 11 months, Livy’s Legacy has raised money for outdoor toys for KTEC-West, where Livy was to have begun school, donated school supplies and backpacks to the Shalom Center, blankets and stuffed animals to the Kenosha Fire Department for families in crisis and in December sponsored four children to Shop with a Cop.
Last October, the family hosted a Chocolate Chip Pancake Breakfast fundraiser at the Danish Brotherhood Lodge. Chocolate chip pancakes were a favorite breakfast treat of Livy’s, explained Schneider.
In the near future, Schneider hopes Livy’s Legacy can sponsor a child to go to summer camp and purchase backpacks for children in foster care.
They also plan to donate school supplies to a different school every year, to a class in the grade which Livy would have attended, Schneider said. “That way we can spread it out throughout KUSD.”
Livy’s Legacy also serves as a clearinghouse of information for other families that may have experienced SUDC.
While money cannot be spent on finding a “cure” for SUDC, Schneider and others are hopeful that research may turn up some type of genetic indicators or “common denominators” about the condition.
The SUDC Foundation knows of 900 families worldwide that have been affected by SUDC, Crandall said. A research scientist at New York University, Crandall is working with investigators to find an explanation for these deaths.
She noted that the SUDC Foundation provides families with case advocacy at the time of death and peer-to-peer support. “We’re trying to provide a road map and a bit of light at the end of the tunnel.”
She also gives credit to families like the Schneiders who step up to the cause. “The majority of our funding comes from families doing fundraising events. They keep it going to help other people,” she said.
“If fundraising can help to buy one piece of research equipment, that would be great,” Schneider said.
In many ways, Livy’s Legacy follows what she might have done herself had she been alive, says her mother.
Livy herself was a model for giving, Schneider said. “Once she gave one her toys to a little boy saying, ‘Well, he was sad, and I don’t like it when people are sad.’”
“I want to do something that Livy would have done, that she would have been proud of,” Schneider said.
The goal is for Livy’s Legacy to become formally established as a nonprofit organization affiliated with the SUDC Foundation.
Until it does, Schneider and her family will continue to do what they’ve been doing for their community. “Livy’s Legacy is the best way to keep her memory going,” Schneider said. “She gets to be part of something larger, even in death. To us, she’ll be forever 4, but forever part of helping others.”