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Acts of Love: The Clute Barrow Nelson Life Foundation
By Liz Conroy
Nov/Dec 2007

On a quiet, tree-lined street in Athens, a house sits up on a hill. Inside, one finds a boy’s room with stuffed toys lining a top shelf across from baseball caps on the wall. In a large photo, an adorable child, Clute Barrow Nelson, grins with twinkling eyes. This beloved boy was taken from his family by an incurable form of cancer – an astrocytoma brain tumor growing on both sides of his brain. Yet, his spirit lives on – past the walls of his little room – reaching out to families across Georgia and elsewhere through the charitable work of the Clute Barrow Nelson Life Foundation, Inc. Clute’s mother, Phyllis Barrow Nelson, explains how the foundation’s work means so much to her and her family. The foundation allows this family to return the generosity they received during the terrible months of trying to save Clute through alternative treatments – treatments not covered by any insurance company.

Phyllis shuts her eyes to hold back tears as she sits in her son’s room and describes how she and Don noticed Clute’s hand shaking when he was five years old. “We thought it was just from holding the pencil too tight,” Phyllis says. “Our pediatrician wasn’t too worried either, but ordered an MRI just to be sure. That’s when we learned about his brain tumor.” Then came months of trying to find a cure for a tumor they learned was inoperable. Since traditional medical treatments could not cure Clute, they researched alternative treatments in Texas and took him there.

When friends, family and the greater community learned that the Nelsons had to find ways to pay for such expensive treatments, they began to send funds. “We knew we were fortunate. We never had to worry about money as more people learned about Clute and wanted to help,” she says.

Sadly, the tumor was too aggressive to stop by any means and ended Clute’s life on May 27, 1998. In spite of their overwhelming grief, the Nelsons moved into action to keep Clute’s memory alive in a way he would have wanted – helping others in need.

“What we went through was horrible, but with the help of the community, we had no money worries. Don and I both had good employers and families nearby. People were so giving and lifted us up in so many ways. We had a good bit left of the money and wanted to use it to help other families,” Phyllis says.

With help from friends and through their own research, Phyllis and Don Nelson established the Clute Barrow Nelson Life Foundation, Inc. Social workers at Egleston and Scottish Rite in Atlanta, Medical College of Georgia (MCG) in Augusta and other locations refer families with children diagnosed with cancer to Clute’s Foundation. Requests for help also come from nearby locations such as Athens Regional’s Loran Smith Center for Cancer Support and St. Mary’s Health Care System. The foundation was set up as a nonprofit 510(c)3 corporation in mid-1999 with the Board of Directors receiving the first request on July 3, 1999. “This would have been Clute’s eighth birthday,” Phyllis says sadly. But she adds how happy she is to know about the wonderful work being done in his memory.

“The social workers see all the heartache that’s out there. Some families live 200 miles away from the cancer treatment center. Some are single parents, and some have other children and no support systems. On top of all the emotional stress, some parents face demotions or getting fired from their jobs for missing too much work,” Phyllis says.

The social workers send a carefully documented form to Phyllis about a family’s situation and financial need. They explain where the financial hardship is greatest and where funds are most needed. Then Phyllis sits down at the desk in Clute’s room and composes a letter to the family. She describes her own family’s experiences, the work of Clute’s Foundation and encloses a check to the family. Or, she may enclose a copy of a check sent to pay the family’s electric bill, car repair or mortgage payment.

“We pay bills, keep the power on, buy wigs for the children, pay co-pays, and whatever else is needed by a family facing financial hardship during their child’s illness,” Phyllis says. She adds that when a family loses the fight against cancer, Clute’s Foundation has even helped with funeral expenses, including flying one child home to Mexico to be buried by her relatives there.

Social worker Amy Green (Pediatric Hematology/Oncology at MCG) praises the foundation for its generosity in assisting families who might not otherwise receive such financial help in times of need. Green says the work of Clute’s Foundation is especially important for families living far from a treatment center. “One family had a thousand-dollar car repair bill,” she says. “The foundation paid the bill because the family did not have the means to do so.” This family could not have kept their doctor appointments for their sick child without a dependable car for the two-hour drive to the treatment center.

The Clute Barron Nelson Life Foundation (CBNLF) continues its unique outreach work to families with children diagnosed with cancer through fund raising events such as the CBNLF Annual Golf Classic and through the generous support of the community.

Please visit the Clute Barrow Nelson Life Foundation Web site at
www.clutebarrownelson.org.

Liz Conroy is a freelance writer in Athens. She is married to a wildlife biologist. They have two teenage daughters (one at Clarke Central High and one at UGA) and three lovable mutts.

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