CARMEL VALLEY — Thanks to the dedicated efforts that began with one Carmel Valley mother, awareness and treatment for a rare illness known as mitochondrial disease have taken a huge step forward over the past nine years.

Debbie Shimizu, an 11-year resident of Carmel Valley, founded the Christini Fund Golf Tournament with her husband, Don Shimizu, in July 1999. It was one year after their daughter Christine, nicknamed “Christini,” lost her battle with Leigh’s syndrome at only 11 months of age.

Mitochondrial disease is a multiorgan disease that can affect children and infants, directly attacking the energy producers in the cells of the human body. Unfortunately there is no cure, and Leigh’s syndrome is the most lethal form of the disease, causing damage to critical areas of the brain that control breathing, blood pressure, appetite and coordination.

“After we lost her, I wanted to do something that would make a difference,” Debbie Shimizu said. “We decided to start this golf tournament, and all of our proceeds go directly to Dr. Robert Naviaux, who is the head of mitochondrial disease research at UCSD.”

The ninth annual Christini Fund Golf Tournament was held Sept. 17 and attracted 180 guests to the Del Mar Country Club for a full day of golf, an auction and dinner at the Del Mar Country Club.

“My volunteers help me out so much,” Debbie Shimizu said. “This wouldn’t be possible without them.”

One of those volunteers is Sue Husband, a 14-year resident of Del Mar who has been heavily involved in the Christini Fund Golf Tournament since it first began.

Husband said that she and Debbie Shimizu first met through their sons, who are now both 16 years old.

“Shortly after I met Debbie, Christine was diagnosed,” Husband said. “We became good friends, and after Christine died, we decided to collaborate for a golf tournament. A lot of people came the first year and it was very successful, so we said, ‘Let’s keep this going.’”

According to Husband, Naviaux has a small two-room lab at UCSD where he sometimes works with three to four research scientists.

“Over the past nine years, we’ve seen him make discoveries and advances that scientists don’t make in 100 years. It’s remarkable,” Husband said.

As a prime example, Husband referred to Naviaux’s recent work with Alper’s syndrome, a form of mitochondrial disease that attacks the central nervous system of infants and children.

“His research, funded by Debbie, discovered the specific gene that causes Alper’s syndrome,” Husband said. “Now, not only can they diagnose babies with Alper’s syndrome, but he was able to create a prenatal test to tell whether an infant had the disease or not.”

These discoveries were proven to work after Hailey Cavlovic, a 16-month-old child from Orange County, was diagnosed with Alper’s syndrome. She eventually lost her battle with the fatal disease, but her mother was able to do a prenatal test during her next pregnancy and learned that the baby she was carrying would not have Alper’s syndrome.

“If I were to have a little child, I’d be worried sick if there was not a test available for this,” Debbie Shimizu said. “Every time your child would get sick it would be a red flag for you. This new level of awareness is a big step forward.”

According to Debbie Shimizu, this year’s tournament should raise more than $80,000. She said the cost to fund Naviaux’s research for one year is approximately $50,000.

“In my opinion, mitochondrial disease is still an emerging field,” Debbie Shimizu said. “There are more researchers now than there were nine years ago, but it’s a gradual process to get more attention on this disease.”

Each year, the event honors a different child who was diagnosed with the disease, and this year, the Christini Fund Golf Tournament honored Ori Levi of Israel and Cullan McPherson of Scotland.

Although the two children eventually lost their struggles with mitochondrial disease, Chris Aguilar of the Christini Fund said the fact that these two families reached out to Debbie Shimizu’s group for support is an important step toward worldwide awareness.

“Our theme this year is global,” Aguilar said. “Hopefully someday soon we will find a cure.”

For more information about the Christini Fund, visit www.christini.org.