Finding organs for kids: Local group is saving lives

Garrett Arion had his first liver surgery when he was 8 weeks old to correct a birth defect. When he was 5 months old, doctors in his hometown of Kokomo estimated he had five to seven months to get a liver transplant, or he would die.\nFred Carreo, 60, suffered from cirrhosis of the liver for more than 10 years before he was found comatose on the floor of his house in Phoenix and was diagnosed with Hepatitis C.\nArion and Carreo are two of many people who need immediate transplants.\nThey are also two success stories for the Children's Organ Transplant Association, a national organization that started in Bloomington. \nCOTA, 2501 COTA Drive, started after David McConnell, a 2-year-old from Bloomington, died while on the waiting list for a liver transplant. Since his death, the organization has helped raise millions of dollars for patients requiring transplants. \nThey recently kicked off another fund-raising campaign.\nThe waiting list for transplants is long. According to the United Network for Organ Sharing, at any moment more than 70,000 children and adults are awaiting transplants. In 1999, according to the data, more than 6,000 children and adults died while on the waiting list. Experts say many more die without being on the list.\nA patient can't be placed on the waiting list until the hospital has proof that sufficient funds are available. Transplants can cost $100,000 and more, said Richard Lofgren, chief executive officer of COTA. He said insurance does not pay for other costs associated with the transplant, such as hotel bills for the family or traveling expenses. COTA helps organize fund-raisers for the patients, which assures the patient at least a place on the waiting list. \n"We pay for everything that is not covered by insurance. Also, for every dollar that the patient raises, we put in 25 cents of our own for up to $10,000. We don't give grants but help people generate the money," Lofgren said.\nJamie Arion, Garrett Arion's mother, remembered the help and comfort she received from COTA. She said her family did not know how they were going to get a transplant for her son, let alone how they would meet the expenses. \n"It was just so awful; I thought he was going to die." she said. \nFor Carreo's wife, Marsha, it was equally terrifying. \n"In Fred's case, it just went on and on for 10 years, and we lived with it," Marsha Carreo said. "He tried to act like he was fine, until the day we found him comatose. Then, he had to be hospitalized and needed a transplant immediately, and we had less than half the time (than) other people usually have to raise the money.\nThe Arions heard about COTA from someone at a hospital in their hometown. The Carreos heard about the group from brochures Marsha Carreo collected.\nBoth approached the organization. \n"I will never forget that girl I first talked to. I told her I was so worried about Fred and how I was going to manage the expenses, since he had lost his job and insurance only covered some of the expenses," Carreo said. \nCarreo said the girl told her it was time to concentrate on her husband's life and keeping up her strength.\n'She told me, 'You stay with your husband; we will take care of everything,'" Carreo said.\nAs long as patients have funds in their accounts, COTA continues to pay for their expenses beyond just the transplants. In cases where further medical help is needed, but the patient does not have enough funds, COTA negotiates with hospital authorities to get some expenses or fees removed from the bill.\nCOTA has regular bone marrow registration drives and other such programs to generate awareness. It is aided by the American Legion, whose offices serve as information centers for COTA.\nFor more information on COTA and its activities, visit www.cota.org.