THOMSON - Four-year-old Julia Smith knows that she is different. However, her mother Helen hopes that soon Julia will just be like everyone else.
Julia has a rare blood clotting disorder known as GT, or Glanzmann's thrombasthenia. The currently incurable disease doesn't allow Julia's blood to clot normally, which can transform a small nick or cut into something much more serious. The disease is very rare, with only around 200 reported cases in the world.
For the third consecutive year, Helen Smith is organizing The Glanzmann's Research Foundation's charity golf tournament to raise money for GT research. For the second year, it will be at Belle Meade Country Club. Play begins Friday.
Smith even has arranged Dr. David Wilcox of the Medical College of Wisconsin - the leading physician in charge of GT research - to come and play in the tournament.
Smith not only wants to raise money to benefit research, but she also wants to educate people on this little known disease.
Helen Smith - shown here with her 4-year-old
daughter, Julia - is
organizing the Glanzmann's Research Foundation's charity golf tournament for the third year.
Photo by Elwood Hamilton
"We're trying to get the public more aware and the community also," she said. "Since we started our Web site (www.curegt.com) a little over a year ago, I've had contact with somewhere between 100 and 150 people with the disease."
Because there are only 200 reported cases in the world, Smith figures that the disease has probably been misdiagnosed or gone undiagnosed in many cases.
"I know it's rare, but it's not that rare," she said.
When Julia was first diagnosed, Smith wasn't quite sure to make of the disorder.
"I didn't recognize the severity of it," she said. "I was thinking, 'OK, this isn't bad,' but I didn't realize how involved it would turn out to be."
Smith concedes that nosebleeds occur often and can even last for days.
"We had one that lasted 11 days," she said. "You can imagine how it affected her."
Julia constantly has bruises on her body, which Smith says can sometimes cause problems.
"She's always got bruises on her back," she said. "During swimming-suit season it's hard."
Julia is very aware of her disorder, and as she's grown older, her mother says that she's learned how to prevent accidents from happening.
"I've been able to watch her play with other children," said Smith, who teaches a few days a week at Julia's preschool. "And if they're getting wild, she'll just go off and play. She knows to avoid it."
Last year the tournament raised $25,000, and this year Smith hopes for even more. This year there will be 10 people with GT who will participate in the tournament.
The fee is $85 per person, and applications are available online at www.curegt.com. For more information, contact Rich Davis at Belle Meade Country Club at 595-1553.
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