PARENTING
01/30/2015 12:41 pm ET Updated Dec 06, 2017

How These Parents Are Starting To Heal After Enterovirus Took Their 4-Year-Old

first day of school foundation

As an outbreak of enterovirus D68 spread across the United States last fall, many parents were swept up by the news, nervously watching to see whether the respiratory illness posed a threat to their children.

EV-D68 is one of more than 100 different types of non-polio enteroviruses, which generally result in only mild illness. The Centers for Disease Control and Prevention reports that between August 2014 and January 2015, more than 1,150 individuals -- mostly children -- were infected with the virus, a number much higher than what has been reported in previous years. Most instances of EV-D68 are not life-threatening.

For 4-year-old Eli Waller, it was.

On Sept. 25, 2014, the New Jersey preschooler, the only boy in a set of triplets, died in his sleep.

"Eli's passing was very sudden," his father, Andy Waller, 40, told The Huffington Post. "We put him to bed and then he just didn't wake up in the morning."

Health officials confirmed Eli's death was a result of EV-D68. Though some children are particularly vulnerable to infection because of pre-existing conditions, Eli had none, nor did he have symptoms when he went to bed that night. His death was a nightmare that came without warning.

Almost immediately, Andy and his wife, Suzanne, knew they wanted to start a foundation in their son's honor and dove into paperwork to establish a nonprofit.

"Looking back, it's very, very blurry -- hazy," Andy recalled of those terrible early days. "You grasp at anything. Family comes to the house, and they're doing chores for you, and you just have to have something to do. Or else you'll go crazy."

The couple briefly contemplated focusing their efforts on enterovirus, but ultimately settled on another cause important to the family: providing support for special education services.

Andy is a special education teacher at a local high school, and Suzanne runs an art and music school that caters to children with special needs. Eli himself had benefited from early intervention programs to help with speech and language delays before he and his sisters, Ava and Sydney, started pre-K.

"[He] just loved school. He loved his teachers, he was desperate to please people. He would try so hard and really do his best all the time," Andy said, recalling how his shy, loving son would often ask, "Are you proud with me?"

The couple's nonprofit, the First Day Of School Foundation, held its first event -- a benefit called "Smiles for Eli" -- one month after he died, at the studios of Erica Haller, a photographer who had once taken portraits of the triplets. Haller snapped Halloween-themed photos of local children at the event, which raised a reported $7,000 for the foundation and funeral costs.

On Feb. 13, the First Day Of School Foundation will host its "Hearts for Eli Gala" at a New Jersey country club. The Wallers expect the event will bring the total amount raised by the organization to more than $100,000. The funds will be given to several special education departments.

"We're going to do these events periodically -- probably two or three a year -- and make financial gifts to special ed departments in local school districts, which are positioned to be able to find kids who might need after-school programing," Andy said.

first day of school foundation

Despite the foundation's accomplishments, Andy admits he has, at times, struggled to find a balance between running it and taking time to grieve, even with the outpouring of help the family has received.

"Am I doing this to beat myself up?" he said he has asked himself. "Am I doing this because I feel guilty and I'm trying to make up for it somehow? Or am I doing this because I feel strongly about honoring him and helping the community?"

Andy jokes that he and Suzanne oversee a team of "unpaid interns" -- all volunteers -- that includes their siblings and close friends, who have all put in hundreds of hours. Others from the community, including bereaved parents with foundations of their own, have also reached out to help shepherd the family through these early months.

And he and his wife have taken turns buoying each other.

"We're a really great partnership. Initially, I was in go-for-it-mode, I-have-to-do-something mode. We both wanted to do this, but Suzie was a little more paralyzed at first," he said. "But now, I'm kind of in wow-life-is-really-kind-of-hard-mode and she's picking me up."

The couple's daughters are also hurting, Andy said, and speak of their brother often. He said the triplets were a "tight team": Sydney the brains, Ava the muscle and Eli the fall guy, who was blamed for any mischief.

"It's a little heartbreaking, but at the same time, it's neat -- they're 4, so they're very connected to the idea of staying connected to Eli," Andy said. "They still have that magic inside them."

As they snuggle with their stuffed animals, the girls tell their parents, "This helps me remember Eli. I talk to him when I'm in my bed."

When Sydney and Ava are old enough, Andy and Suzanne plan to sit them down and discuss what they have done through the First Day of School Foundation. They intend to ask their daughters how they envision the organization's future and whether they want to be involved themselves or simply move on.

Until then, working with their nonprofit is helping the parents with the long, hard process of trying to heal.

"Sometimes I'll have doubts in my mind when it's the middle of the night and I'm sending emails and I'll think, 'What am I doing to myself?'" Andy said. "But in another sense, it's very easy, because this is a thing I can do that can move me toward love and family ... and being okay."

first day of school foundation

This post is part of HuffPost's Transforming Tragedy series (read more here, here, here and here). If you or someone you know has started a charity after the loss of a child, we'd love to hear your story. To submit a nomination, email thirdmetric@huffingtonpost.com.

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