During tonight's men's basketball game between Marquette and South Florida (7 p.,”In a story published last March, the Tribune reported about the story of Kirby Wilson, who has suffered from Sanfilippo Syndrome for more than a decade, and the research organization her parents formed in her honor, the Children's Medical Research Foundation.
During tonight's men's basketball game between Marquette and South Florida (7 p.m. tip-off) at the Bradley Center, the Student-Athlete Advisory Council will hold its annual fundraiser. The proceeds will benefit the Children's Medical Research Foundation, which works to find a cure for Sanfilippo Syndrome and other neuro-genetic disorders.
"It's gradually becoming more difficult to fundraise, because my parents' commitment to Kirby has become more strenuous," said Kirby's older sister, Maggie, a sophomore women's tennis player at Marquette. "Smaller events like this are much more appreciated because it's less work for my parents."
Members of the SAAC will be dressed in green "Cure for Kirby" shirts and will be passing out informational flyers at the beginning of the game. They also will be accepting donations as those in attendance exit the Bradley Center tomorrow night. Last season, the SAAC raised nearly $4,000 during the men's basketball team's Feb. 19 home game against Villanova.
Sanfilippo Syndrome is an inborn error of the metabolism that is transmitted as an autosomal recessive genetic disorder. It is subdivided into four types: A, B, C and D. All types are associated with some degree of mental deterioration. Several physical defects that are associated with the disease include: speech delays, hyperactivity, sleep disorders, loss of abilities to walk and talk and death by an early age.
In the past few months, Maggie Wilson said her family decided to insert a feeding tube into Kirby, not because it was extraordinarily necessary, but because it would make administering the proper amount of medications much easier.
"It's easier to keep (Kirby's) nutrition up and make sure she gets the medications she needs," Maggie Wilson said. "We've seen improvements in her behavior. She's doing much better."
Kirby, 16, was diagnosed with Sanfilippo Syndrome in 1995 and lives with her parents in Hinsdale, Ill. To date, the Children's Medical Research Foundation, founded in 1995, has raised more than $2.9 million toward medical research.
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