Grief as a Building Tool : Mother of Fatally Ill Child Raises Funds to Start Special Clinic

Sherri Greenlee will one day stand before her son Cory’s grave. The 5-year-old La Verne boy is battling a fatal childhood disease called Leigh’s syndrome. He will, doctors say, die from neurological deterioration within the next five years.

Greenlee will not wait idly for that day. She and the local Chili’s Grill & Bar, at 1912 Foothill Blvd., are sponsoring a festival, cooking contest and 5K run Saturday to raise money for a proposed Leigh’s Center at UC San Diego Medical School.

The $50,000 treatment, education and research center would be the first of its kind, Greenlee said. “The government hasn’t granted any money for research because they said not enough kids were dying from it,” she said. “It’s an orphan disease.”

Leigh’s syndrome is a genetic disease that quickly degenerates the central nervous system and causes loss of motor control and breathing control, retardation, brain seizures and dementia. It strikes one child in 50,000, with 500 to 1,000 diagnosed cases in the United States, said Denine Hagen, a UCSD spokeswoman.

Greenlee said she first became aware of Cory’s disorder when he was 9 weeks old. “I went into his room in the middle of the night to feed him, and he wasn’t breathing,” she said.

Had Cory not been revived that evening, doctors told Greenlee, they would have incorrectly diagnosed the problem as sudden infant death syndrome. “I wonder how many of those children with SIDS really died from Leigh’s syndrome?” she said.

Chili’s manager, Nora Lang, decided to sponsor an event for the center after she heard that Greenlee had walked 30 miles--through the San Gabriel Valley--on each of Cory’s last two birthdays, raising a total of $31,000. “We wanted to help out,” said Deborah Torti, a Chili’s employee who helped organize the event.

So far, seven people have signed up for the chili cooking contest and 75 people have registered for the 5K run, but organizers expect more people to register on the day of the festival. Runners will pay a $10 registration fee ($15 if they want a Chili’s T-shirt), and cooking contestants will be charged a $30 registration fee. All proceeds will go toward starting up the center.

“Sometimes Cory asks me if I can go with him when he dies,” Greenlee said. “But I tell him I have to stay and take care of his sister.”

Greenlee’s 8-year-old daughter, Erika, also has a 50% chance of developing Leigh’s syndrome by the time she is an adolescent, doctors have told Greenlee.

She is determined to see the Leigh’s syndrome center opened.

In a steady voice, she said, “I refuse to stand at his grave site and ask myself, ‘What else could I have done?’ ”