Growing with grief: Charity helps family after child's loss

Editor's note: If you or someone you know needs help navigating grief, visit www.griefresourcenetwork.com/crisis-center/hotlines/ to find a comprehensive list of hotlines and other resources.

Levi Stephen Collom loved superheroes, family, outside playtime and camping trips to Current River. He loved his friends at the day care he once attended in Sikeston, Missouri, which he often referred to as though it were his job, his maternal grandmother Viney Mosley recalled Wednesday.

"When he went to day care, he called that his 'work.' He would 'go to work,'" she said laughing at the memory. "He even had [a pacifier] at school, so in case he forgot one, it was there."

In March 2012, the Collom family's world was turned upside-down.

Levi -- the baby of the family at only three and a half years old -- lay down for a Saturday afternoon nap March 17 and never woke up.

A photograph of Levi Stephen Collom is seen next to his funeral service bulletin in this undated photo. Levi died unexpectedly in March 2012; his was a case of Sudden Unexplained Death in Childhood.

His death was a case of Sudden Unexplained Death in Childhood (SUDC), and the abrupt way he died left his family in unshakable despair.

"When it happened ... it just felt like my soul had been ripped out of my body," Mosley said. "Like somebody had just reached in and ripped out my soul."

At the time of his death, Levi's older sister Victoria -- now a senior in high school with plans to attend college in the fall -- was only 9 years old. Levi's younger brother, River, was born about a year and a half after his death.

Though River never got the chance to know Levi, Mosley said their mother, Ellie, and father, Glenn, of Benton, Missouri, have found ways to keep his memory alive so River knows about his brother.

"It's hard to imagine what [River] thinks, but he knows he has a brother, and he's in heaven," Mosley said. "Every time I look at ... River, I wonder ... what would Levi look like when he was 6? But to us, he's always gonna be three and a half. He'll always be three and a half."

Viney Mosley, of Cape Girardeau, sits with her late grandson, Levi Collom, in this undated photo. Levi died unexpectedly in March 2012; his was a case of Sudden Unexplained Death in Childhood.

Absorbing grief

According to the National Organization for Rare Disorders, SUDC is the sudden death of a child 12 months of age or older that remains unexplained after a case investigation, completed autopsy and other examinations are performed. The SUDC Foundation estimates about 400 children are lost to undetermined causes in the U.S. each year. The foundation also states SUDC is the fifth-leading category of death among children ages 1 to 4. Despite this, there aren't many answers out there for families affected by SUDC.

In the immediate days and weeks following Levi's death, the grief and confusion his family felt were overwhelming.

And for Mosley, the grief was doubled: Not only did she grieve the loss of a grandson, but she grieved the sorrow felt by her daughter, Levi's mom.

"All I kept thinking about is my daughter," Mosley said. "I had pain, physical pain. It was horrible. But then watching her go through this made it doubly hard."

Though eight years have passed, not a day goes by Levi isn't on his grandmother's mind.

"I think about Levi every day," Mosley said. "But the enormous pain, the physical pain, has subsided."

Mosley said the family has found support through private social media groups designed specifically for families who have lost a child to SUDC.

"It was a really terrible time," she remembered. "And the only way we got through it was because of other people reaching out and helping us."

But some things will never be the same.

Mosley said she knew the family was "never going to make it" through that first Christmas at home after Levi's death. So instead, they packed their bags and spent the holiday at Disney World.

"It was a wonderful way to, I guess, step out of the world," she said. "It was such a distraction from the pain [we would have felt] if we'd stayed home."

Now, the way they celebrate Christmas has changed.

"We have our family holiday the first weekend of December," Mosley said. "We all get together for dinner, and we don't exchange gifts. We just get together to be around each other to connect that way because it's not about the gifts. ... Ever since Levi died, that has never been a big deal for us."

On a personal level, Mosley said she was irrevocably changed by the loss.

"I'm a different person than I was when Levi died," Mosley said. "I think I'm not as naive as I used to be."

It was several years after the fact before Mosley said she stopped "crying constantly." And she has learned that while her grief looks different today than it did eight years ago, it never truly goes away.

"You just sort of absorb it, [the] grief," she said. "It just becomes part of you."

'Our saving grace'

Levi's Adventure Trail is an open love letter to Levi from his family.

Every piece of the Cape County South playground was designed with him in mind, Mosley said Wednesday.

"The playground has everything in it that he would have done over at Current River," Mosley said. "He loved water, he loved sand, he loved rocks, and he loved to climb. ... And there's a Native American theme to Levi's Adventure Trail that comes from the property that [Levi's family] camps on at Current River."

Soon after Levi's death, the family established Levi's Children's Charity, a not-for-profit supporting projects and efforts to restore hope, happiness and health to children and families as well as research, education and family and children support.

"I said to my daughter, 'We have to do something, set up a fund or something so people can donate money because people are going to want to do something,'" she remembered. "When you lose a child, it's horrible. It affects so many people. It affects their entire community."

Levi's Adventure Trail replaced a dilapidated, antiquated playground, Mosley said.

"As [the playground parts] would break down, they would just have to haul them off because they couldn't even get parts for them anymore," Mosley said.

So it was a fortuitous opportunity that Levi's family had to help build a new playground.

The original playground design for Levi's Adventure Trail was the brainchild of Ellie, Mosley said, and in May of 2012, a volunteer artist created a rendering of the playground with the Current River-inspired themes Ellie had hoped to include.

"That was her journey," Mosley said of her daughter. "She wanted to keep his name alive. She just didn't want [Levi] to have been born and died and no one ever really know him."

In partnership with the Cape Girardeau Parks and Recreation Department, Mosley said Levi's Children's Charity board was able to obtain a federal Land and Water Conservation Fund matching grant from the U.S. Department of the Interior -- and administered by the Missouri Department of Natural Resources -- to build onto the playground and to replace other playground equipment at Cape County Park South.

According to the Department of the Interior website, these grants have funded projects in every county in the country, more than 40,000 projects since 1965.

Through donations on its website, Levi's Children's Charity raises money and accepts in-kind donations specifically for the building and maintenance of the playground.

In addition to filling a need in the community, creating the playground also became the family's distraction from a wrenching loss.

"It was, I guess, our saving grace," Mosley said. "It was something to keep us focused on that seemed positive, and the energy of people wanting to help us, it was tremendous."

To the community that wrapped its arms around Levi's family in the wake of their tragedy, the playground is intended to be a place for families to enjoy with their children.

And though Levi's Adventure Trail opened Nov. 5, 2017, the family isn't finished adding to it.

According to Mosley, the board for Levi's Children's Charity plans to add two new features to the park this year, including a motion-activated, audio-guided playset called a Sona Play Arch and a Global Motion rotating playground climber.

"We realized the kids like to do interactive stuff," Mosley said. "So, we looked for things that would accommodate more than one child at a time."

The charity also promotes SUDC awareness through education on Facebook and through local media outlets, but Mosley noted the charity itself does not give money to the SUDC Foundation.

"Personally, we support SUDC," Mosley said. "But all Levi's money stays local."

For more information about Levi's story, the Levi's Adventure Trail playground or to donate, visit www.levisadventuretrail.com.