Riley patients ready for Marathon

For the past 13 years, IU Dance Marathon has worked to raise money for the kids of the Ryan White Infectious Disease Center at Riley Children's Hospital in Indianapolis. This weekend, Dance Marathon will announce its donation results the members worked to produce this year.\nIn 1991, Dance Marathon's first year of existence, the event raised nearly $11,000. Last year, the event produced just over $415,000. \nThe patients at Riley depend on Dance Marathon not only for the money, but also to know somebody is out there fighting for their cause.\n"The children that we try to raise money for are amazing," Dance Marathon President and senior Stacy England said. "A lot of them have been coming (to Dance Marathon) for years and years and become a part of our family."\nOlivia Puzzello and Stacy Thornburgh are two of those children who have become important to the Dance Marathon family.\nOlivia Puzzello is an eight year old living in Bloomington. Just before she turned six months old, she was diagnosed with lissencephaly at Riley. Lissencephaly, the scientific term for "smooth brain," is a chromosome malfunction that causes the brain to appear smooth on the surface.\nUnable to walk or talk, Olivia is able to make facial expressions. Her mother, Katherine Sherwood-Puzzello, said Olivia's brain capacity is comparable to that of an infant between one and five months. But she can communicate how she is feeling to her loved ones.\n"She smiles when she's happy and cries when she's upset," Sherwood-Puzzello said. "I know how she feels by the expressions on her face."\nShortly after Olivia was diagnosed, the doctors told Sherwood-Puzzello and her husband, Paul, that they didn't expect her to live past the age of two.\n"They told us to take her home and love her," she said. "Now she's eight and the normal life expectancy is five years old. We are grateful for that."\nTwenty-year-old Riley patient Stacie Thornburgh has been coming to Bloomington to participate in Dance Marathon activities for the past 12 years. She suffers from a long list of heart, lung and brain problems, including hydrocephalus and cerebral palsy. \nThese illnesses have impaired Thornburgh her entire life. She has constant asthma and lost the use of her left arm from cerebral palsy. Her case of hydrocephalus causes an abnormal buildup of liquid on her brain. Effects of this condition include headache, nausea, vomiting and occasional blurred vision.\nOne visit a month to Riley in the winter and one every couple months in the summer is typical for Thornburgh. But she said she keeps a positive attitude.\n"I'm the 'Riley Re-Run,'" she said. "I'm in and out of Riley like a revolving door."\nThis past June, Thornburgh graduated from Arlington High School in Indianapolis and said she hopes to move out of her parents' place and in with her sisters shortly. \nJust recently she started an online support group for kids with illnesses and disabilities.\nEngland said Dance Marathon is not just for the 15 families that hope to attend the event this weekend; it's for the hundreds of ailing children that need treatment at Riley each year.\n"We work for them," she said. "They are the inspiration and motivation." \n-- Contact staff writer Alex Pappas at apappas@indiana.edu.