Arnold youngster named state group’s Child of the Year

Devon Parks doesn’t just believe in miracles — she says she has proof they exist.

Parks’ 3-year-old son, Isaiah, was born with the rare disease called DiGeorge Syndrome, but he has outlived his 2-year life expectancy.

He recently was named 2009 Child of the Year by the Pennsylvania Elks Home Service Program.

“Words can’t really tell you how you feel with it,” Parks said. “To see your child go through what he did and then get honored as that, it’s amazing. I can’t even say; that’s how proud we are.”

DiGeorge Syndrome can cause frequent infections, speech delay, heart and kidney problems and other serious symptoms.

Isaiah inherited the disease from his father, Eric.

Parks said doctors began to suspect something was wrong during her pregnancy. After Isaiah was born on Oct. 9, 2005, DNA tests confirmed that he had DiGeorge Syndrome.

“It was really frightening,” Parks said. “He didn’t even have a face (while still in the womb) until he was at 7 months. They couldn’t find facial features or anything.”

Because of the disease, Isaiah was born with a deformed foot and a hole in his heart — problems that gave him a life expectancy of two years. He had to undergo reconstructive foot surgery when he was 3 months old and open-heart surgery when he was 1 year old.

During the open-heart surgery, Isaiah’s heart stopped twice.

“It was hard — very hard,” Parks said. “Especially seeing your child die twice in front of you. My husband saw it once.

“He’s a miracle, basically.”

Today, Isaiah lives pretty normally outside of wearing a brace on his right leg. He does still have a blocked kidney that may eventually be removed.

Because his current mental capability is equivalent to a 2-year-old’s, Isaiah attends the Westmoreland Intermediate Unit Preschool in New Kensington. Parks said the school is helping Isaiah with his currently limited speech.

“He can’t really express himself that much, but he’s starting to, thanks to the schooling,” Parks said, watching Isaiah play with his toy cars. “But he’s pretty much quiet. This is what he does.

“If he wants something, he’ll say ‘Car,’ or ‘Eat.’ He’s finally saying if he’s hungry. He’s pretty all-around OK.”

The Parks family receives assistance from the Elks Home Service, a free program funded by donations. Elks nurse Kathy Camilleri comes to the Parks’ house to assist them with anything they need, whether it’s medical help or help with Isaiah’s schooling.

Camilleri nominated Isaiah for the Child of the Year award in the fall, and the Parks family found out he won in the spring. He was recognized at a ceremony at Seven Springs last month.

“They were just a shining example of what we do,” Camilleri said.

DiGeorge Syndrome has made life difficult at times for the family. But Parks said her son’s personality more than makes up for the challenges.

“He’s wonderful. He’s gone through so much,” she said. “It’s amazing how someone could have so much wrong with them and go through it, bounce back and be the way they are today.

“It’s just proof that miracles happen.”

© 2009 by The Tribune-Review Publishing Co.