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Ventura County

Triathlon Takes a Run at $100,000 Goal

Charity: Ventura event today is a tribute to a woman who fell victim to a genetic disease.

July 14, 2001|KARIN GRENNAN | SPECIAL TO THE TIMES

Dina LaVigna didn't have an athletic bone in her body, and in her last months disease had weakened her to the point she could no longer pick up her baby son.

But Jeff Schmitt, who lives with their 5-year-old son in Camarillo, finds a triathlon in Ventura today a perfect tribute to a woman who cherished life, squeezing every drop from it she could until her death four years ago.

"It makes you think of life and the wonderfulness of life when you see all these people running for a good cause," Schmitt said.

Grant LaVigna, who grew up with his sister in Camarillo, started the triathlon--which benefits the Dina LaVigna Breath of Life Fund--in August 1999. Dina LaVigna suffered from lung disease and primary immunodeficiency, a genetic disease marked by a weak immune system. She died at age 33 during a lung transplant operation.

Two years ago, Grant LaVigna of Beverlywood recruited a friend, and--starting at the Ventura Pier--they swam a quarter-mile, biked 65 miles and ran 15 miles.

The men asked friends and family members to sponsor them, arranged for matching donations and came up with $15,000.

The next year, 15 athletes, all family and friends, participated in a triathlon that included a half-mile swim, a 70-mile bike ride and a 16-mile run. They raised $30,000.

This year "we really wanted to get more people and open it up to the public," LaVigna said.

They designed a Web site and talked to local triathlon clubs and hospitals. To recruit more triathletes, they scaled down the distances to about Olympic lengths--a half-mile swim, a 25-mile bike ride and a 6.2-mile run.

About 130 athletes will participate today, beginning at 8 a.m. in Marina Park, and they hope to raise about $100,000.

"It's growing almost faster than we can keep up," LaVigna said.

The money goes to a fund set up by Schmitt after his wife's death.

They were living in New York City, and both complained about the room at Mount Sinai Hospital where she received monthly intravenous injections of gamma globulin to boost her immune system.

The hospital is considered a leader in primary immunodeficiency treatment and research. However, the couple thought the infusion room needed a make-over, particularly for the many children who spend hours there.

"It looked like you were getting an infusion in the closet," Schmitt said. Schmitt initially hoped they could buy a television and VCR. But with matching grants, they raised $125,000.

Its size was doubled, and computers, comfortable chairs, a television, VCR, patient desks with telephones, a refrigerator and a nursing station were added. The fund also paid for toys, computer games, tables, plants, magazine subscriptions, videos and tape players. The Dina LaVigna Breath of Life Room was dedicated in April 2000.

Primary immunodeficiency is a set of disorders ranging in severity up to the "Bubble Boy disease," and is diagnosed in one in 500 Americans, Schmitt said. Like other sufferers, LaVigna was constantly sick.

When in her early 20s, researchers developed an intravenous treatment, and she participated in early studies, Schmitt said.

Primary immunodeficiency disease patients often suffer from other complications because the disease isn't diagnosed and treated early and organs are damaged. It was lung disease that killed LaVigna.

The lung disease prevented her from carrying a child, so she and Schmitt arranged to have a surrogate. But when Zack was born, LaVigna took a turn for the worse. When Zack was 6 months old, she was too weak to pick him up. She died when he was 13 months old.

"He almost daily says he misses his mom," said Schmitt, a computer systems consultant.

The money raised today will improve facilities at UCLA Medical Center--Dina LaVigna graduated from UCLA--and Children's Hospital, where she was treated as a child. "It's phenomenal," Schmitt said. "I never thought this would go beyond that room at Mount Sinai."

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