Eden's Army: Child's spirit lives on in foundation that helps families

News-DemocratMay 4, 2014 

Eden Neville lived just 28 days.

Her parents Jared and Adrianne Neville, of Swansea, are making sure her spirit lives on.

They're establishing Eden's Army, a non-profit foundation to help families with children staying in St. Louis Children's Hospital's Cardiac Intensive Care Unit. Their first event, a May 10 trivia night at Althoff Catholic High School, is already sold out.

"She touched so many people's lives," said Adrianne, "we didn't want that feeling to go away. We didn't want people to forget her."

They plan a summer blood drive and a kid-friendly happening near Eden's birthday.

"We want our events to keep her memory going," said Jared.

"The foundation's motto is 'expect miracles,'" said Adrianne. "We believed the miracle was going to happen until the very end. We didn't get ours, but believe they still happen."

As the Nevilles talked, their three preschoolers -- twins Mackin and Rhett, 4, and daughter Maryn, 2 -- ran around the family room, sometimes spinning, other times collapsing onto each other, sometimes banging into the corner of a table and needing a hug from Mom, or to be held by Dad.

It's a girl

Eden Elizabeth was born Nov. 9, 2013, a healthy 7 pounds, 10 ounces, at Memorial Hospital in Belleville.

"We had her home for two days when she developed a high fever and we went to Children's Hospital," said Adrianne, an 8th-grade math teacher at Whiteside School.

"She got admitted to the PICU at 1:35 in the morning," said Jared, who is a region manager for B. Braun Medical.

The scared parents stayed close to their infant daughter.

"As silly as it sounds, you don't want to leave and go downstairs," said Adrianne, "yet you want to stay healthy. If you are sick, you can't stay around them."

Eden was diagnosed with viral meningitis that attacked her heart. She spent the next 26 days in the hospital.

"There were definitely highs and lows," said Jared.

"We had to have hope," said Adrianne. "We allowed ourselves to be happy about good days."

"Also, even no-change days," said Jared.

"While we were there, we knew we wanted to start a foundation for her," said Adrianne. "We didn't know if we would be raising money for her -- with her being possibly a heart transplant recipient -- or toward the hospital."

The baby was sedated much of the time. They couldn't even hold her.

"At one point, there were 19 different IV pumps," said Jared. "The boys came up twice. They go to school right next to Children's at Central Institute for the Deaf (Mackin is hearing impaired). They were almost more interested in the machinery."

The situation was hard for their 2-year-old to comprehend.

"The one time we brought Maryn, she wanted to bring her home," said Adrianne, tearing up. "We considered (Eden) our miracle. These three were invitro. She was a surprise. Unfortunately, she wasn't here long enough ... Our biggest goal is to make Eden part of our lives."

"Oh, Mom, you're OK," said Maryn, patting her mom. "I will make you better."

"We talk about the foundation being our therapy," Adrianne continued. "We're still blessed enough to be parents."

"Are you OK?" Maryn asked.

"Sometimes, I just get sad."

"Now, you are better?"

Help from all sides

As rough as the situation was, Adrianne and Jared, both 1997 Althoff grads, realized they had a lot more than many families in their position.

"We were fortunate to have not only proximity, but family support, good insurance, jobs that were understanding," said Jared. "A lot of families are split up. They come from different parts of the country. They're out of work because of how long they have to be away."

They noticed families living in the waiting room.

"It would be nice to have a kit that would have some things to get you through a couple days," said Jared. "Toothbrushes and toothpaste, gum."

And more.

"We want to try to make someone else's experience more comfortable, whether it's from gift cards to restaurants -- cafeteria food gets old -- a night in a hotel that's close by, or even try to financially support a family."

"We are never going to get a reason why it happened to Eden," said Adrianne, "but we can make this come from it.'

The Nevilles stilll marvel at how kind everyone is. Friends stepped up. Co-workers and former co-workers got involved.

"People from high school we haven't seen in years reached out or sent things," said Adrienne.

"Gift cards for dinner," said Jared.

Comforting words and prayers poured in.

"It was nice just being thought of," said Adrianne. "It didn't matter what came our way."

The goodwill continues.

"People are still commenting, sending cards," said Adrianne. "We still get one card a week, someone from college or high school."

That weeknight, the family was preparing to head over to Grandma's birthday party. Extended family live close by. Huge black and white portraits of their children -- including one of Eden --hang in the hallway. Out front, the yard waits to be sodded.

"December 29, we moved into this house," said Adrianne. "My husband's brother got married Dec. 21. We found out (recently) we got an offer on our old house.

"As busy as that was, it helped distract us for a while."

Now, they're in touch with a hospital social worker, exchanging ideas on how the foundation will work.

"We are so looking forward," said Jared, "to the part where we can turn stuff over to Children's Hospital."

Want to help? Visit Edensarmy.com. You can make a donation through paypal or send a check. They can also use new toiletries, travel size shampoo/conditioner, lotions, tooth brushes, toothpaste, etc.; new books, infant to adolescent; new baby socks, bibs with plastic backs and hair bows.

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