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Boys survive with special diet

April 20, 2000



Here's a schedule of March of Dimes WalkAmerica events in the Tri-State area:

MARYLAND

Washington County

Sunday, April 30

Registration at 8 a.m., walk starts at 9 a.m.

Long Meadow Shopping Center

Hagerstown

Length: 8 miles

301-797-5459.

Frederick County

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Sunday, April 30

Registration at 8 a.m., walk starts at 9 a.m.

Baker Park

Frederick, Md.

Length: 7 miles

301-797-5459.




PENNSYLVANIA

Franklin County

Sunday, April 30

Registration at noon, walk starts at 1 p.m.

Chambersburg Memorial Park

McKinley Street

Chambersburg, Pa.

Length: 7.5 miles

1-717-267-2550 or 1-800-533-9255 (toll-free for Pennsylvania residents only).




WEST VIRGINIA

Berkeley County

Saturday, April 29

Registration at 8 a.m., walk starts at 9 a.m.

War Memorial Park

Martinsburg, W.Va.

Length: 5.5 miles

1-304-263-2003 or 1-800-828-9280.

Jefferson County

Saturday, May 6

Registration at 9 a.m., walk starts at 10 a.m.

Shepherd College midway

Shepherdstown, W.Va.

Length: 5 miles

1-304-263-2003 or 1-800-828-9280.

Morgan County

Saturday, Sept. 16

Registration at 9 a.m., walk starts at 10 a.m.

Berkeley Springs High School

Berkeley Springs, W.Va.

Length: approximately 5 miles

1-304-263-2003 or 1-800-828-9280.

By MEG H. PARTINGTON / Staff Writer

MARTINSBURG, W.Va. - A digital kitchen scale and charts in a spiral notebook ensure the health of Tripp and Jack Baronner.

Because of a disease known as PKU, the boys can't eat meat, fish, poultry, beans, dairy products, nuts or anything containing NutraSweet.

cont. from lifestyle

That leaves fruits and vegetables and a grainy, chalky formula they'll have to take for the rest of their lives.

PKU, or phenylketonuria, is an inherited disease that causes mental retardation and other neurological problems if treatment and the special diet are not started within the first few weeks of life.

The disease is diagnosed through a blood test created in 1961 with the help of March of Dimes funding. The test is done about 24 hours after birth.

In the boys' case, it was discovered that their parents, Ann and Bob Baronner of Martinsburg, are carriers for the gene that causes the disorder.

Those with PKU can't metabolize proteins containing the enzyme phenylalanine, explains Dona Dei, director of program services for National Capital Area Chapter of March of Dimes.

Every day, the Baronners measure how many grams of phenylalanine the boys consume by writing down everything they eat in a notebook. They can then calculate how much of the enzyme Jack, 6, and Tripp, 8, eat.

They use a scale to weigh all the boy's food, even in restaurants where their options often are limited to french fries, baked potatoes or steamed vegetables.

The boys drink 20 ounces of formula a day that provides 80 percent of their dietary needs, Ann Baronner said. Jack gets a little Strawberry Quik mixed with his; Tripp gets vanilla pudding mix.

In addition to fruits and vegetables, the boys eat lots of foods low in phenylalanine that are ordered from suppliers in Rochester, N.Y., Gaithersburg, Md., and Seattle.

"It's very expensive to feed them," said Ann Baronner, 41.

She makes low-protein tortillas and soft pretzels from scratch, as well as a "fake" peanut butter. Dad makes the formula every night and occasionally bakes bread.

"She's like a short-order cook," Bob Baronner, 41, said. "I could never do it as well as she does. She's so creative."

"I'm kind of an amateur nutritionist," Ann Baronner said.

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