Tuesday benefit will aid Silvis boy


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Originally Posted Online: Dec. 08, 2013, 11:35 pm
Last Updated: Dec. 09, 2013, 5:13 pm
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By Stephen Elliott, selliott@qconline.com

SILVIS — Daniel Lyons sits on a chair in his living room, in sweatpants and sweatshirt, a machine on his lap keeping him alive.

The machine has a cord that goes into the 12-year-old's stomach. The cord is surrounded by patches of gauze, wraps and bandages that need to be changed two to three times a week.

"Our lives totally changed," his mother, Laura Lyons, said of the last several months.

Her son, Daniel, needs a new heart.

Turn the page back to September when Daniel was an energetic kid who played basketball outside with his friends, built Legos and ran through his yard feeling free and good.

Fast forward to this week, when Daniel sat quiet and restrained, the heart machine attached to his stomach a reminder of how fragile life can be.

His mother stood in the family's small living room, near the entrance to the kitchen. The room has a couch, a chair, a Christmas tree and some boxes of clothes the local school donated for her younger boys, ages 4 and 3.

The medical bills are coming in, and Ms. Lyons and her husband, Isaac, are trying to keep Daniel alive and the family together.

"That machine is like a hard driving going inside his stomach," she said. "It's a lifeline for him. If this wire came out, Daniel's heart would stop."

On Sept. 28, Daniel told his mother he was having a hard time breathing.

"I thought he was having another asthma attack," Ms. Lyons said. "So, on Sept. 29, he wakes up Sunday morning, and I'm getting all the kids ready to go down to grandma's, so I can go to work.

"I was playing around with Daniel, tickling him, and he said, 'Stop, my chest hurts, my chest hurts.'

"Daniel won't tell you if he's having a hard time breathing or if something is wrong."

Later that morning, Daniel's grandmother and Ms. Lyons' mother, Robin Schmidt, of Coal Valley, called her daughter at work.

"She told me Daniel is having a heck of a time breathing," Ms. Lyons said. "Grandma took Daniel to the emergency room at Trinity. He puked a bunch of mucus outside her car.

"They did a chest X-ray and found his heart was enlarged. He was in heart failure and they don't know how long he was in heart failure."

Daniel's grandmother credits a nurse practitioner at Trinity for saving her grandson's life.

"If it wasn't for her taking that extra step to give him an X-ray instead of saying no, he wouldn't have been here," Ms. Schmidt said.

Daniel was flown to OSF St. Francis Hospital in Peoria and then to St. Louis Children's Hospital, where he spent days in a coma.

They stabilized him until he could leave the St. Louis hospital on Oct. 28. Ms. Lyons is meeting with Daniel's doctor next week to put her son on a heart transplant list.

Earlier this week, Ms. Lyons was able to go back to work at Stoney Creek Inn in Moline. Her husband, Isaac, delivers newspapers for The Dispatch and The Rock Island Argus. Daniel's grandmother, Ms. Schmidt, works at the Bettendorf HyVee.

They work around each other's schedules to take care of Daniel and the Lyons' three other children.

"I get off work at 7 a.m.," Ms. Schmidt said. "She (Ms. Lyons) goes in at 8 a.m. She can go back to work. She just got her first check in two months."

In the living room, Daniel's little brother, Isaac Jr., is going through some bags of clothes Glenview Middle School donated to the family.

Ms. Lyons removes a small sweatshirt and holds it up against Isaac Jr.'s chest. Daniel smiles as he watches his little brother's enthusiasm, the kind of energy he once had.

"Daniel can't even lift five pounds," his mother said. "He's very nervous. He's scared. I'm like, 'what are you scared of, honey?' He says, 'mom, I'm just scared I'm not gonna wake back up.'"

Ms. Lyons pauses for a moment. "Try to explain to your son how he's going to get a new heart. It's not an easy story."

For health insurance, the Lyons' have an Illinois Medical Card. The flight from Peoria to St. Louis cost $45,000. Ms. Lyons said two bills came in this week, totaling more than $1,000.

"I'll just put that to the side for now," she said. "That's all I can do."

Daniel carries pictures of his visits to the hospitals. There are pictures of him asleep, tubes and machines hooked up to him in his hospital bed.

If a heart is found for Daniel, his parents will be trained to provide care 24 hours a day for the heart ware that will be inserted in his body.

For now, Daniel carries his small machine with him everywhere he goes. But, even with the machine, he still has a hard time breathing.

"He's got to prop himself up pretty good with pillows," his grandmother said.

Daniel shrugs. "It's not so bad," he said. "It's getting better. I'm not using as many pillows."

He's trying to find a sense of normalcy. He went back to school Monday for the first time since coming out of the hospital. He will spend a few hours at school, accompanied by a nurse, and also have home-schooling at night.

He still enjoys video games and wants a Play Station 4 for Christmas.

"If somebody buys him a PS4, they'll be his best friend forever," his mother said with a laugh.

Daniel, a smile coming to his face for the first time, agreed. "Hmm Hmm," he said with a nod.

Daniel is a fighter.

"Our lives totally changed," Ms. Lyons said. "It's all about Daniel now. He's my hero, my trooper, my fighter."


Taco benefit

A Share Your Heart for Daniel taco benefit dinner will be held at Mulligan's Valley Pub, 310 W. 1st Ave., Coal Valley, Ill., from 5 to 8 p.m. Tuesday Dec. 10.

The taco dinner will also include a bake sale, basket raffles, 50/50 raffle and more. 

For more information, call 309-791-1569.














 



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