Editor’s Note: This is the first in a four-part series about one family that benefits from the volunteer work of Dance Marathon.

Katie Ogden was born the fourth of five children to Paul and Laura Ogden of Zearing.

“She was tiny, dark-haired and just beautiful,” said her mother, Laura.

As an energetic 10-year-old, she has many goals and ambitions. Katie likes soccer and dance, and anxiously anticipates the opportunity to play volleyball when she reaches sixth grade.

“Most people are quite taken by Kate,” Laura said.

Even though Katie appears completely healthy, only 11 days after she was born, she was diagnosed with the genetic disorder phenylketonuria, or PKU. Now, Katie deals with the disorder every day of her life.

PKU causes the amino acid phenylalanine to build up in the blood stream. The buildup can lead to severe mental retardation and other nervous system problems if it is not detected and treated by 3 weeks of age, according to www.webmd.com.

The disorder is regulated through a diet that restricts the amount of protein that contains phenylalanine. Phenylalanine cannot be cut from a person’s diet completely because it is essential for proper growth and development. Foods such as meat, eggs, nuts and bread must be strictly regulated because they contain high amounts of phenylalanine, according to WebMD.

At the time of Katie’s birth, Laura was a licensed practical nurse. She said the rest of the family dealt better with the diagnosis than she did, due to her exposure to extreme effects of the disease in a nursing home where she had worked.

“I had taken care of a woman with the mentality of a 1-month-old,” Laura said. “[She] ate her clothing and sucked her thumb.”

Because Katie’s condition was detected early she has not suffered any mental retardation, Laura said.

Katie’s life expectancy is the same as that of any other child.

Her diet is strictly regulated by her family and school in order to prevent any possible brain damage, Laura said.

“If we watch the diet really closely, we can go to Fazoli’s for dinner,” Paul said.

When cooking, Paul and Laura try to have meals for Katie that are similar to what the rest of the family eats, as well as one dish the whole family can eat, Laura said.

The family also has food and ingredients ordered from a dietary specialty store. Spaghetti costs $6.95 per pound plus shipping and handling, Laura said.

Laura also makes a special homemade bread for Katie, at a cost of nearly $8 a loaf.

“It is dry, but it makes good toast,” Laura said.

The Colo-Nesco Community School dietitian coordinates Katie’s meals so she can eat a school lunch like other students, Laura said.

“I eat different things [than the other children],” Katie said, “but now they don’t make fun of me.”

Every Wednesday, Katie’s blood is checked to measure the level of phenylalanine present. The test is the same that is done on a newborn’s blood before he leaves the hospital, and Paul said it only requires about three drops of Katie’s blood.

Katie said she sticks her own finger for the test and understands what the results mean.

A result of between four and five is normal, but when the result is six, Katie said “I get real cranky.”