Through horse races, an art show and the 5K run, the Robie Foundation has made great strides in raising awareness of persistent Patent Ductus Arteriosus, a condition affecting one in 2,000 children. The foundation was established by Debra and Robert Masterson in memory of their son Robie, who passed away suddenly from complications of PDA 15 days before his fourth birthday on Nov. 4. In its few months of existence, the Robie Foundation has already raised more than $30,000— money the Mastersons hope to use to keep other parents from losing their children to PDA. Sixty people, earing Robie Foundation shirts donated by Real Estate Consultants in Sparta, ran or walked for the foundation in Saturday’s Main Street 5K Run in Sparta. While proceeds from their race entries went to Pass it Along, the race beneficiary, supporters raised more than $7,500 in pledges for the foundation, said Kathleen Gagg, a real estate agent who ran for the foundation. After several months of involvement in the foundation, Gagg discovered in February that her daughter Brianne, 9, also had PDA, which was surgically corrected at Colombia Presbyterian Medical Center.“If it hadn’t been for the Mastersons, I wouldn’t have been as proactive in my daughter’s diagnosis as I was,” Gagg said. But the 5K was just one drop in the bucket for the foundation. On April 9, the foundation held “A Night at the Races” at the Pegasus Restaurant overlooking the Meadowlands Race Track, raising in excess of $20,000. More than 180 people attended, including John Sterling, announcer for the New York Yankees. Sterling held a special auction of items autographed by Jose Posada, Bernie Williams, Derek Jeter, Hedeki Matsui and Joe Torre.

Pupils at the Hunter School in Ogdensburg, the preschool that Robie had attended, raised $3,200 at an art show held to benefit the foundation. Pat Kane, owner of the school, rented the Ogdensburg firehouse and displayed the artwork of 70 preschoolers in frames donated by Alish’s Paint Store in Sparta. Parents attended the “art gallery,” naming the price they wanted to pay for their children’s works of art. The Mastersons plan to use the funds raised to publish educational books about PDA, including a children’s storybook explaining the condition and an informational booklet for parents whose children are diagnosed with the condition, Debra Masterson said.The books should be printed within the next two to three months, she said. Every child is born with a patent (or open) ductus arteriosus, a blood vessel connecting the two large arteries of the heart to allow blood to flow to the lungs and the placenta, which usually closes within 24 hours after birth. If the ductus remains open, the child is diagnosed with PDA, also known as a heart murmur because of the extra sound made when the blood squirts through the opening of the PDA into the lungs, according to Dr. Robert Sommer, associate professor of pediatrics at the Mount Sinai Medical Center in New York. The condition is especially dangerous when a child has other complications, Masterson said. Robie suffered from seizures, which put too much pressure on his heart. “So many children who have it could live their whole lives without a problems, but when they have one or two complications, there is a risk,” she said. A goal of the Robie Foundation is to have children get routine echocardiograms, an image of the heart produced by ultrasonography, in order to detect any heart defects, Masterson said.“We want to encourage baseline echocardiograms, much like women are encouraged to get baseline mammograms,” she said. Masterson and Gagg will discuss the mission of the foundation on Chris DeBello’s morning show “Issues and Ideas,” broadcastedon WSUS (102.3 FM) on May 1. 2005.