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Heart-warming response

June 22, 2008|By MARIE GILBERT

HAGERSTOWN - In many ways, Alivia Koontz is a typical little girl.

She loves wearing nail polish, dressing up like a princess and playing make-believe.

But life for this 4-year-old has been anything but a fairy tale.

She was born with hypoplastic left heart syndrome (HLHS).

In simple terms, Alivia has half a heart.

Angela and Jimmy Koontz of Hagerstown had been high school sweethearts and were excitedly awaiting the birth of their child when doctors delivered the devastating news. Ultrasounds had shown that the left side of the baby's heart had not developed properly.

To correct the problem, the couple was told their daughter would need several heart procedures. There is no cure for HLHS, but the surgeries would allow the right side of the heart to do the work of both, doctors said.

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Before Alivia was born on March 25, 2004, she already was facing a risk-filled infancy. Five days later, she would have her first surgery.

Since then, life for the Koontz family has been filled with hospital visits, more operations and unending doctor appointments.

"It can really be nerve-wracking," Angela Koontz said. "But we take it day to day. We have a strong faith and a lot of support from family and friends."

On Saturday, the family also received support from the community.

A fundraiser benefiting the Alivia Koontz Medical Expense Fund was held throughout the day at Washington Square United Methodist Church in Hagerstown's West End.

Activities included a car and truck show, food stands, music from the 1950s and 1960s, and a remote-controlled car race for children sponsored by AutoCare Elite.

The event was organized by Scott Hoffman of Scott's Speed Shop.

"Alivia is my nephew's daughter," Hoffman said. "In a way, it's personal. But I think when there's a need, people should help."

Hoffman, who is a member of Washington Square United Methodist Church, said the church has adopted Alivia as someone they want to help.

Last fall, the church held a spaghetti dinner to benefit the little girl and it was so successful, they decided to do another fundraiser, Hoffman said.

"I thought a car show might be fun," he said.

By late morning, about 30 vehicles had signed up to participate in the show. Visitors could vote for their favorite car or truck, with donations going to the medical fund.

Among those participating in the car show was Nick Horton of Hagerstown, who brought his 1997 Pontiac Grand Am.

Horton is on an 18-day leave from Iraq, where he serves with the U.S. Army.

"Scott recently did motor work for my car, and when I went to his shop, I saw a sign on the door about the fundraiser," Horton said. "I thought it was a good cause and a chance to enter my car in a show."

"Today's fundraiser means a lot to my family," Angela Koontz said. "It's wonderful to see so many people come out - people who don't even know us."

Koontz said Alivia will be facing another surgery this fall.

"In addition to HLHS, Alivia was born with a small right lung," she said. "This next surgery will address that problem."

Koontz said her daughter has been "a real trouper" dealing with all of the obstacles she's faced in her young life.

"But she's beginning to develop a slight anxiety," she said. "She now knows the road to her doctor in Waynesboro (Pa.). If we head in that direction, she's not happy."

Koontz said Alivia has to have a lot of shots, takes four daily medications and is getting over a bout with bronchitis, which means extra medicine.

Alivia tires quickly and has a slight blue tint to her skin, lips and fingers, which is normal for an HLHS patient.

And medical conditions normal for most children, such as a cold or fever, can mean a trip to the emergency room.

"Alivia knows there's something different about her life compared to her little sister, Caitlin, who is 1 1/2," Koontz said. "But I don't think she's old enough to know the seriousness of it yet."

Despite the rough road, Koontz said the family is optimistic that Alivia's ongoing illness will improve.

"We're very hopeful," she said. "We've had one miracle after another."

Contributions to help with Alivia's medical care may be sent to Washington Square United Methodist Church, 538 Washington Ave., Hagerstown, MD 21740, and should be marked "Alivia Koontz Medical Fund."

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