It's a serious disease with an unusual name: Maple Syrup Urine Disease.
"Had never heard of it, wish I never heard of it," Evan’s mom Kelly Grube said.
At first, doctors had no idea what was wrong with Evan.
"When we got him home, he just wasn't acting like a normal child would be,” his dad Matt Grube’s said. “And, you know, we kept taking him pediatrician, he was losing weight. He wasn't eating. He'd throw these massive fits and what not."
Just seven days after he was born, Evan was diagnosed with the rare disease.
"They said we really don't know much about it," his dad said.
"All I asked them was is he going to live or is he going to die?" his mom said.
One side effect of the disease is his urine smells like maple syrup, but the bigger issue is Evan's body cannot break down proteins correctly. If his protein levels get too high, he could suffer irreversible brain damage.
Now, Evan is 18-months-old and his parents spend most of their time closely monitoring him.
"How many hours it's been since he ate, how many ounces did he take? What do we have to make up?” Kelly said. “Do we have to get up in the middle of the night to feed him? That's what our life has revolved around since we've had him home with us, and it never ends."
Evan is on a top of a list for a new liver which would rid him of the disease. But for now, his mom said they unfortunately have to wait for another family's tragedy.
"When that day happens and that family is so gracious, you know, their angel is in heaven, they can have hopefully have some peace knowing that they're saving another child,” she said.
Both Evan's mom and dad wanted to donate a part of their liver but couldn't because they are both carriers of this genetic disease.
The Grube's insurance covers a majority of the medical expenses, but the family still needs some help.
Family friends are throwing a fundraiser for the Grubes on Aug. 23 at Pekin Marine Corps, 13370 Garman Road. There is a $5 donation at the door, and visitors can enjoy live music, raffle prizes, food and even a petting zoo. All the money raised will go towards Evan’s transplant.
For more on Evan’s story, visit achangeforevan.org.
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