LOCAL CHILD WINS GRANT TO HELP WITH MEDICAL EXPENSES

Brandon McArthur of Jackson is one of five children with a life-threatening illness to win a $1,000 grant toward his medical expenses from a health and wellness Web site.

But his mother is more excited about Brandon's story appearing on the AccentHealth Web site. She hopes his story there will make people more aware of ataxtia-telangiectasia, the deadly, debilitating disease that is robbing 8-year-old Brandon of muscle function, and perhaps increase donations toward A-T research.

"We hope Brandon's story on the Web will help raise awareness," said Lisa McArthur, Brandon's mother.

At this time, there is no effective treatment for children with ataxtia-telangiectasia. The disease causes these children to be radiation sensitive, immune deficient and 1,000 times more likely to develop cancer. It causes muscles to deteriorate. Brandon cannot dress himself now and has been in a wheelchair since last summer. Most children with A-T die in their mid- to late teens.

The genetic disease is rare, just 500 children in the United States have it, so no government money is allocated to fund specific A-T research, McArthur said. So the McArthurs do what they can to help raise funds for the A-T Children's Project, an organization founded by a family with two A-T children that raises money for A-T research.

On the AccentHealth Web site (www.accenthealth.com/winners/), Brandon comes across as a regular 8-year-old. He lists his favorite athletes as the Southeast Missouri State University basketball team, his favorite food as macaroni and cheese and his favorite hobby as spending time with the family, which includes his mom, dad, B.J., and sister, Brittany.

But the blurb on Brandon also has the McArthurs describe what it's like to live with ataxia-telangiectasia. "Brandon doesn't know any better," his mother is quoted as saying on the Web page. "He was a normal child at birth but every year got physically worse. He has adjusted very well because he is a happy child and nothing bothers him except going to the doctors and dealing with the needles."

"These kids are so wonderful," said Edith Hodkinson, vice president of marketing for AccentHealth, about the five children chosen to receive grants and be featured on the Web page. "They are a great example to others."

Hodkinson said the grants were part of a $100,000 commitment to charity made by AccentHealth, which provides health information television programming for doctors' offices in addition to the consumer health and wellness Web site.

The company asked the office administrators of the 10,000 doctors' offices that use its service to nominate children's charities to be the recipients of donations. The top five nominees, which received donations of $10,000 to $50,000 each were the Juvenile Diabetes Foundation, American Juvenile Arthritis Organization, Make a Wish Foundation, National Childhood Cancer Foundation and Elizabeth Glaser Pediatric AIDS Foundation.

"Then the administrators asked if we were doing anything for the children in the charities they were nominating. We thought that was a wonderful idea," Hodkinson said.

So through its Web site, AccentHealth asked for nominations for five grants to children for $1,000 each.

McArthur said she was told about the company seeking nominations by the people who run the Make A Child Smile Web page, which Brandon had been featured on in April 1999. That Web site features children with life-threatening illnesses and requests that people send them cards. McArthur said Brandon received more than 500 cards after his appearance there.

Brandon's name was one of the five grant recipients selected by a random drawing.

Hodkinson said the hope is by featuring these children Brandon, two leukemia patients and two girls with osteosarcoma it will encourage those who read about the courage with which these children face their battles.

Visitors to the Web site can leave messages for the children and their families, and those with serious illnesses can join Web-based support groups, Hodkinson said.

McArthur said her family is using the $1,000 grant to install handrails in a hallway and bathroom of their home and a chair lift for the bath tub, items not covered by the family's insurance.

McArthur said the insurance has covered most medical expenses. Because of it and help from other sources, like an $8,500 wheelchair from Wishing Well of St. Louis and a $2,500 wheelchair lift for the family's van from Sikeston Regional Center, the family has not been out a great deal of money on Brandon's medical bills.

This has allowed them to do more fund-raising for the A-T Children's Project, which has funded research in the treatment of A-T, McArthur said. In the last four years, the research has isolated the A-T gene and provided pharmaceutical companies with mice models for developing drugs to slow the progression of the disease. For more information about the A-T Children's Project, call (800) 543-5728 or visit its Web site at www.atcp.org.

"We take it day by day and try not to worry about the next day," McArthur said. "We pray very hard each day that they will find a cure for A-T."