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'Mono' provides a scare for heart patient's family

May 16, 2008|By BOB MAGINNIS

For many young people, mononucleosis is more of an inconvenience than a serious illness.

But for Angela and Jimmy Koontz of Hagerstown, "mono" raised the fear that their 4-year-old daughter Alivia might be going into heart failure.

I met the Koontz family in 2004, shortly before Alivia was born. The couple, who had been high school sweethearts, had just been told that their unborn daughter had hypoplastic left heart syndrome, or HLHS for short. In simple terms, the left side of the heart does not develop properly.

To correct the condition, doctors said the child would need three heart procedures.Though there is no cure for HLHS, the doctors believe the surgeries will allow the right side of the heart to do the work of both sides.

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The family has been on an emotional roller-coaster ride ever since. Medical conditions that would be normal for most children, such as a fever, can prompt a trip to the emergency room for Alivia.

There have been a lot of those, many more doctor visits and more medical bills than the family can keep up with.

Alivia's mother, Angela Koontz, said her daughter's latest illness has been particularly nerve-wracking, because mono's symptoms mimic those of another serious condition.

"All of the signs of mono are also the signs of heart failure - the tiredness, the fever," Koontz said.

The spleen also swells and the liver is affected, too, she said.

Throughout the illness, Alivia was told not to exert herself, but staying still was something she did not want to do, her mother said.

Alivia will not have her next surgery at least until fall, Koontz said, in part because the doctors still want to see her gain more weight.

"She's 25 pounds and is 4. Her sister is 22 pounds and is 1," Koontz said.

The family is going to a new feeding clinic where experts try to persuade Alivia to try new foods. For now, her few favorites include Chicken McNuggets and grilled-cheese sandwiches.

"We just conquered peanut butter," said her mother with a laugh, adding that Alivia hasn't gotten to the point of accepting jelly with it yet.

While we chat, Caitlin cries and I ask Koontz if there's another, better time to talk. No, she said, it's like this all of the time.

Asked how the family is holding up, Koontz said, "We're doing OK. The last couple of weeks have been pretty rough."

Asked what sustains them, Koontz said, "We have strong, strong faith. We have each other to lean on and we have family and friends who've been very helpful."

Some of those friends are putting on a fundraiser to help with Alivia's medical bills on Saturday, June 21, at the Washington Square United Methodist Church, 538 Washington Ave., in Hagerstown's West End.

The events will include:

· A car and truck show, on the parking lot in rear of church, with a $10-per-vehicle entry fee.

Vote for your favorite car or truck. Donations will benefit the Alivia Koontz Medical Expense Fund

For more information, contact Scott Hoffman at Scott's Speed Shop at 301-791-2589.

· Music from the 1950s and the 1960s.

· A remote-controlled car race for children sponsored by Auto Care Elite, starting at 11 a.m. Each round's winner wins an Auto Care Elite T-shirt.

· A food stand supplied by the church.

Bob Maginnis is editorial page editor of The Herald-Mail newspapers.

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