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'We just ask everybody to pray'

April 03, 2002|BY BOB MAGINNIS

Deborah Harris says she thought her 11-year-old daughter Tiffani was getting so many leg cramps because the child was going up and down the steep hill that leads from their Prospect Street home to Hagerstown's Wheaton Park. But a visit to the doctor last May confirmed that it wasn't that simple.

"They told me she had renal disease," she said.

The family was sent to the University of Maryland Hospital in Baltimore, where doctors confirmed that Tiffani's kidneys weren't working as they should to cleanse the waste from her blood.

A catheter was inserted so that the child could undergo peritoneal dialysis, a procedure that can be done in the home so the patient doesn't have to go to a dialysis center for extended periods. Then Tiffani was put on the transplant list.

"I told them I'd be a donor, if I could. It's a long testing process to determine if you can be a donor," she said.

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"They tested me and her father, but I turned out to be a better match. We have the same blood type," she said.

"Then I had to go see a psychiatrist, to make sure somebody wasn't putting a gun to my head to do this. They asked me, 'Why do you want to give up something of yours like this?'"

Harris says she told them that "Any of my kids, if they need anything I have, I'll give it up. They come before me."

After passing the psychiatric review, the hospital began the process of working her up for the transplant, which meant many more trips down the road to Baltimore. Harris' vehicle, a Ford Aerostar, guzzles about $20 worth on each round trip, she said. Sometimes there are three or four trips per week.

The two went to Baltimore for surgery last Nov. 14.

"I was scared. They took me before they took her," Harris said.

Afterwards, she said, she was more sore than in pain, but still stayed at the Ronald McDonald house for a month. She got little rest, she said, and spent most of her time visiting her daughter.

"I got to the point where I couldn't sleep at night," she said.

The doctors finally told her to go home, she said. But when she arrived she found that the sewer had backed up into the basement, ruining the washing machine that she'd counted on to save her the cost of going to the laundromat. Her father gave her a used machine to replace it.

But the satisfaction she felt from helping her daughter didn't last long. The kidney she'd given to Tiffani had started to clot and a second surgery was necessary.

The catheter was reinserted in the hope that it would help the new kidney work better, but it didn't. Now Tiffani is back on the transplant list and undergoes home dialysis four or five times a day. The child has also developed high blood pressure and diabetes, which means 13 different medicines, a special diet and precautions against infection.

"There was a time that when she went out in public she had to wear a mask to keep from getting other people's germs and she didn't like that, so she wouldn't go," she said.

All of the procedures and the waiting for doctors' phone calls made if difficult to work, after her boss told her she couldn't give her a days-only schedule.

"It's not that I don't want to work. I'd love to get out and work, but I can't afford a nurse to come in and care for her," Harris said.

And so the family of four - there are two other children - makes ends meet with some help from the Department of Social Services and Tiffani's Supplemental Security Income check.

"I got her SSI check yesterday, and it's gone. I had to pay my bills," Harris said.

Harris has been reluctant to even ask for help, and only did this interview after being persuaded by members of Shiloh United Methodist Church, who are setting up a bank account for Tiffani at Hagerstown Trust.

Asked what people could do to help, Harris said, "We just ask everybody to pray. We've got a lot of people who are not helping us financially, but are giving us support."

But a little money wouldn't hurt, either, she said.

"It would help with the gas and with the bills," Harris said, adding that an occasional night out would be good.

Now their chief entertainment is TV and board games, like Monopoly, Scattegories and Life, Harris said.

Tiffani did not want to talk, but listened to her mother, occasionally smiling and pulling a blanket up to hide her face when mom said something that embarrassed her.

She hopes to return to school for the seventh grade and to go back to playing touch football in the park. In contrast to her mother, for whom putting up a brave front has become a full-time job, she seems to be a happy child, confident that everything will work out.

If you'd like to help, go to any Hagerstown Trust branch and make a donation to the Tiffani Burnett fund, Account No. 163-465. Then say a prayer of thanks you don't have to walk the same road as Deborah Harris.

Clarification:

In my recent column on the cost of living in the City of Hagerstown, city officials listed one of the advantages of city living as being served by a "professional fire department." The volunteer treasurer of one of the city's volunteer companies took offense, saying it was a slight against the volunteers.

I am sure it was not intended in that way, but rather as an endorsement of the professional manner in which all city firefighters work. In fact, city officials told me, though I didn't include it, that many paid firefighters are active in county volunteer companies when not working for the city.

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

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