| OCR Text |
Show Hepworth's cancer, heart surgery odyssey over By MARK EDDINGTON Staff Writer BOUNTIFUL Shane Hep-woith Hep-woith stands poised on the high dive at the Bountiful Indoor Pool. It looks fairly routine to onlookers, but for Shane it marks a new beginning. begin-ning. He has never dived from this height before. Glancing downward and after one last breath of air, the 17-year-old Bountiful native catapults into space and the welcoming embrace of the water below. Mission accomplished! It is a new beginning for Shane after a 10-year odyssey which saw the teen-ager battle cancer and undergo heart transplant surgery at the University of Utah Medical Center. Shane was diagnosed with Ewing Sarcoma when he was seven and was able to beat the cancer with radiation and by taking the chemotherapy drug adriamycin. Unfortunately, the drug critically damaged his heart muscle, leaving Shane with little energy and constantly con-stantly short of breath. The doctors diagnosed the ailment as cardiomyopathy, car-diomyopathy, probably the result of adriamycin and radiation poisoning. Because of his damaged heart, Shane could not play sports, ride bicycles or engage in many activities ac-tivities other boys take for granted. He was forced to be a spectator, watching others play and do things he could not do. His leisure time was limited to watching television and playing Nintendo. During the years that followed, Shane's heart continued to weaken despite continuous drug therapy. The prognosis, his doctors said, was not good. Fortunately, Shane's odyssey has a happy ending. With the help of the Children's Organ Transplant Association (COTA), Shane received receiv-ed a new heart and a new lease on life. There are others who have not been so lucky. COTA was founded by David Cain as a nonprofit charity in April 1986 to assist the families of children in need of life saving organ transplants. In 1985, Cain learned about the plight of a Bloomington, Ind. infant David McConnell, who was in need of a liver transplant to survive. Cain was asked to arrange for a chartered flight to take David and his parents to a Chicago hospital for transplant surgery. Cain made the arrangements only to have the trip scratched after David's parents could not raise $80,000 for the operation. In desperation, des-peration, Cain started a "Let David Live' campaign and raised over $100,000 in a two-month span. David was approved for a transplant and placed on a waiting list. He died in May 1986 while still awaiting a donor. Angered by the experience and inspired by the little boy, Cain formed COTA and placed the money he had raised for David into a special fund to help other children obtain organ transplants. The organization has since spread nationwide and came to Utah in April of last year. Shane is - am. one of six Utah children COTA is assisting. Since 1986, COTA has raised millions of dollars to assist over 106 children. COTA would like to help every individual in need of a transplant, but due to limited resources, focuses on children under 21. COTA's primary goal is to ensure en-sure no child is ever prevented from receiving a transplant because of a lack of funds, said Nola Taylor, who is the state coordinator for COTA. Taylor, who is a full-time volunteer vol-unteer for the organization, works 40 plus hours a week and logs many miles coordinating bake sales, raffles and other COTA fundraisers fund-raisers to help the six children. The Utah chapter of COTA has raised $400,000. Taylor estimates a million dollars is required to care for the state patients. "Transplants are not cheap, she said." A bone marrow transplant costs about $200,000; a heart transplant as much as $ 1 80,000. Insurance In-surance often covers only part or nothing of the cost of transplant surgery, hi addition, mere is no pediatric transplant facility in Utah, so parents with children needing transplants, must pay air and hotel fare to seek medical help in other states. "We try to help families so they aren't selling their home, car or first bora child,' ' Taylor said. To prevent this, COTA takes the financial pressure off parents shoulders. COTA will help mobilize relatives or close family friends to chair a committee to raise money for the surgery, which enables the parents to care for their children instead of wondering where the money will come from. "COTA told me that as Shane's mother and caretaker, I couldn't be involved with all the head hassles of fund raising. It was too much pressure,' said Colette Turner. If the amount raised falls short of what is necessary for transplant surgery, COTA makes up the difference. dif-ference. "We only ask that the families do everything they can to raise the money. Our families have worked very hard to do what they can,' Taylor said. All the proceeds from fundraisers fund-raisers are given to COTA, which registers the amount in the child's name. Any money that is left over after the surgery goes into a revolving revolv-ing fund to help other children. Shane's stepfather Barry Turner and his mother Colette selected Shane's father Paul Hepworth and his wife Mary to lead fund-raising efforts. The Turners also enlisted the efforts of American Bikers Aimed Toward Education. In conjunction with the city of Bountiful, the Hep worths sponsored a haunted house and raised over $5,000. A motorcycle run and pic nic sponsored by ABATE yielded another $1,500. A garage sale and a raffle are in the planning stage. "We'll keep raising money until people are tired of helping and hearing hear-ing about us," Colette said. The Turners are grateful for COTA and other volunteers for taking charge of the financial burdens. "I honestly don't think we could make it on our own," Colette added. Shane's parents are more fortunate for-tunate than most. Barry, who works as a truck driver for Associated Foods, has good insurance which pays most of the expenses and, because it was a heart transplant, the surgery could be performed instate. in-state. Shane's new heart is considered con-sidered a bargain at $86,000. But surgery is only a part of the cost. Shane must take cyclosporine, an anti-rejection drug which prevents his body from rejecting the heart, for the rest of his life. Cyclosporine costs $215 a bottle and Shane goes through three bottles each month. In addition, Shane needs drugs to suppress his immune system. When Shane turns 19, he will no longer be covered by Barry's insurance. in-surance. Thanks to COTA, this is another potential problem the Turners will never have to worry about. The organization will continue con-tinue to assist Shane and other children for life. "We look at it like a life insurance in-surance policy," Colette explained. No insurance company will take him on because of his past health problems. This gives us something to fall back on. " Four months after receiving his heart, Shane is no longer tired or short of breath. He exercises daily to condition his body, which is not used to physical activity. He is trying try-ing to condition his body to catch up with his heart, Colette said. Already, his mother has problems keeping up with her son and is adjusting ad-justing to the fact that Shane can do much more himself and doesn't need her as much. If the doctors agree, Shane should start school in several weeks. "I can't wait," he said. "It will be great to be with my friends and have a social life once again." The success of Shane and other COTA kids is what makes Taylor's job worthwhile, she said. "I've never done anything in my life that is so gratifying. We meet the parents and their children that we help at COTA fund-raisers and hug each other. We have become one happy family." Summer is months away and Shane is already making big plans. His friend across the street wants to take him water skiing. It is just one more item on Shane's list of things to do, just one more mission to accomplish. : -A '" "; Ft V , fJt r4 t ' i ' v. -;-: 1 1 S .hv : f wl I ; ( t lit r n rv . -i ow, I - . .... k 'z ( ? " I s nr"'K ' V V y"r. ' i-i-i i-i i-r w w " More than 50,000 people benefited from organ transplants last year. Yet thousands are kept waiting by a lack of money and organ donors. Children's Organ Transplant Association (COTA), assists families who have children needing transplant surgery. COTA aims to ensure no child is turned down for an organ transplant because of a lack of funds. |
