Benefit helps fund tuberous sclerosis research

~ Tuberous Sclerosis Alliance helps families cope and offers a support system for caregivers.

The fourth annual Southeast Missouri Bridge Benefit for tuberous sclerosis, held recently at Dalhousie Downtown, increased awareness for TS and raised $7,500 to be donated to Tuberous Sclerosis Alliance for research. TS is a genetic condition characterized by lesions of the skin and central nervous system, tumor growth and seizures. Jackson, Cape Girardeau, Charleston, Perryville and Caruthersville bridge players, 44 in all, came out to support TSA. "This is the most we've ever had," said organizer Linda Tewis, whose grandson of Kansas City, Mo., has the condition.

Locally the benefit honored a Jackson girl, Natalie Brown, and Hayden Carron of Perryville, who both suffer from tuberous sclerosis.

Haydon's mother, Kathy Carron of Perryville, spoke at the benefit on how TSA has helped her and her family cope with her son's TS while providing a support system of other caregivers in similar situations. The bridge benefit was a boon to Carron because prior to it, the closest support group she knew of was in St. Louis. Carron offered her heartfelt thanks to all those donating.

Trip to Washington

Through a TSA newsletter Carron learned about the bridge benefit and spoke to Tewis' daughter, Laura Tipton Kosizek, by telephone. Carron said it was comforting to be able to talk with her.

Kosizek has recently gone to Washington, D.C., to meet with representatives this week and make an appeal for research funding for TS. Tewis will also make a similiar appeal to state Sen Jason Crowell, R-Cape Girardeau.

Carron and her husband, both nurses, read everything on the Internet they could find when they found out their son had tuberous sclerosis. "It was the worst thing we did. The Tuberous Sclerosis Alliance would have been able to direct us to the right kind of information," she said.

Instead of inundating caregivers with all the worst-case scenarios, TSA tries to provide information for families coping with the disease and empowering them with action they can take. "For instance, there's a diet to help with seizures," Carron said. "There's so many free resources available because all the small fund-raisers add up. Eighty percent of their budget comes from fund-raisers like these."

TSA was founded in 1974 with the goals of uniting to provide fellowship, generate awareness, pursue knowledge and provide hope to those sharing the common bond of tuberous sclerosis complex. The goals of the four motivated mothers who founded the alliance are still driving the organization today. Their mission is finding a cure for tuberous sclerosis while improving the lives of those affected.

Developmental delays, mental retardation and autism are often the result of the condition. The tumors resulting from tuberous sclerosis are noncancerous, but may cause problems. Tumors that grow in the brain can block the flow of cerebral spinal fluid in the spaces in the brain, leading to behavior changes, nausea, headaches or a number of other symptoms. Tumors in the heart can cause problems at birth if they are blocking the flow of blood or causing severe arrhythmia problems. Tumors in the eyes are not as common, but can present problems if they grow and block too much of the retina. Kidney tumors can become so large they eventually take over all of the normal kidney function.

Bridge benefits

The uncertainty of the prognosis of those with TS makes support between caregivers even more important. Caregivers must cope with symptoms that can change quickly if the development or growth of tumors change.

Hayden, now 5, had heart surgery at 3 weeks old. He is not talking yet, but his classes at Perryville Elementary School have helped him to communicate with sign language. His father, Pat Carron, said he can make complete sentences using the American Sign Language system. "He knows the names of people. Friends, family, therapists and animals and objects that are appropriate for his age."

Hayden's grandparents, Marge and Chauncey Carron of Perryville, played in the benefit. Kathy would like to recruit more people from her community to take part in the bridge benefit next year. "I'm thinking we could grow this plan," she said.

John Whitehead of Charleston played at the benefit for the third consecutive year. "It's a wonderful cause. I missed the first one because I didn't know about it," he said. For him, bridge is good therapy. "It's relaxing to me." Retired for four years, Whitehead plays bridge as much as he can. "I've had more than one doctor say crossword puzzles and bridge will ward off dementia."

Winners were first place Kitty Rueseler, second place Evelyn Riley, third place Jan Cotner, fourth place Marge Carron, fifth place Shirley Gelsheimer, sixth place Frankie Schott, seventh place Pat Robert and eighth place Claudine Bishop. The winners received prizes donated by individual supporters.

cpagano@semissourian.com

335-6611, extension 133