The Cruses` journey began when their first child, Zachary, was born two years after they were married.
"He had failure to thrive almost immediately," said Nancy, 39, a stay-at-home mom.

After countless tests, doctors discovered that Zachary had Pompe`s disease, a rare disorder characterized by extreme muscle weakness, respiratory complications and an enlarged heart.

Nancy said that most children with Pompe`s die before they`re 5. Zachary died eight months after the diagnosis.

Almost immediately, the couple started The Cruse Foundation, kicking it off with an annual golf tournament and fundraiser at Pebble Brook Golf Course in Noblesville.

The goal, Nancy said, was to raise money to help find a cure for Pompe`s disease and fund research at some of the country`s top medical centers.

After Zachary`s death, the Cruses had Jacob and Joshua, and then Julia was born in May 1998.

"When she was born, you couldn`t even tell anything was wrong," Nancy said. "Then she got a cold and we took her to Riley (Hospital for Children)."

Tests proved that Julia also had Pompe`s disease but a less-severe case than Zachary. Doctors were more familiar with the disease then and were able to treat Julia with more-current medicine. She died, though, from complications of the flu just before her third birthday.

The Cruse Foundation then started the annual Julia Ann Cruse Memorial Ball.

Since 1994, the foundation has raised more than $85,000 for research, and for the last two years the Cruses have pledged to raise $100,000 for the Riley Children`s Foundation.

The hospital is in the process of building a 10-story inpatient facility, and "one room will be in memory of Julia and Zachary," said Nancy, adding that on May 12 the foundation presented Riley with $51,000 toward the pledge.

"We`re grateful on many levels," said Patti Tehan, major gifts coordinator for Riley Children`s Foundation."They`ve (the Cruses have) really raised awareness."

"We just hope that no one has to go through what our family has gone through with this disease," said Greg Cruse, father of five healthy children, Jacob, 12, Joshua, 10, Jackson, 7, Jaden, 5, and Jameson, 2. "We really want to save any child afflicted with this and other diseases."

Copyright 2007 IndyStar.com