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Devastating Disease Inspires Parents and Kids to Raise Money for a Cure

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Duke Health News 919-660-1306

DURHAM, N.C. -- The crushing weight of the news made Roberta and Dave Lombardi feel like crumbling: Their 9-year-old daughter Lindsay had a brain tumor.

Lindsay, however, reacted with characteristic calm and practicality. She called her best friend and said, "I won't be able to spend the night with you because I have a brain tumor."

That simple message embodied the unfaltering acceptance, faith and perseverance Lindsay would carry with her throughout the following year, as she resolutely endured 15 hours of brain surgery and many months of physical and occupational therapy.

Later, when doctors advised Lindsay to spend half days at school and sleep in the afternoons, her answer was swift and sure. She insisted on attending full days of school, and she struggled through the lingering effects of her disease to earn a place on the A/B honor roll during her first quarter. Now, one year later, she continues to do very well.

"Lindsay has been our strength and our encouragement," said her mother."Her tenacity and courage have carried us through. She has not ever complained, she has no anger, no fear and no bitterness about her experience. She is doing just incredibly well."

Lindsay's spirit mobilized an entire community to rise up and care for a family in need and to support a larger cause that otherwise might have gone unnoticed. As word spread of her condition, the Lombardis' family, friends,neighbors, colleagues and church members cooked food, mowed the lawn, ran errands and called with words of love and support. Lindsay's teachers -- some from as far back as kindergarten -- came in droves to visit her in the hospital. Her classmates were eager to take turns staying inside from recess to hang out with Lindsay.

"We've seen a side of the human condition that we never could have imagined," said Roberta, who works in the medical profession along with her husband. "The support we have received from our colleagues and the community has just been overwhelming and incredible. During the month of June, it was the support, prayers and love of so many people that sustained us."

More than just a lifeline to individual families, the people who supportDuke brain tumor patients are also the backbone of a critical fund-raisingevent that supports the Brain Tumor Center at Duke.

Dozens of teams throughout the Triangle area and nationwide organize carwashes, bake sales, spaghetti dinners and bowling tournaments to raisemoney to support novel research and clinical trials to combat this deadlydisease. Each of the teams will unite on April 20 to pool their money andpresent it to Duke, while they also gather to celebrate the lives and thelove of their family members. Games, face painting, balloons, entertainmentand a 5K run are an integral part of this annual celebration, to be heldfrom 8 a.m. to noon April 20 at Duke's Wallace Wade Stadium. There alsowill be a family walk in the Sarah P. Duke Gardens.

The celebratory event is called "Angels Among Us," in honor of the youngpeople who have valiantly fought their disease. Some families, like theLombardis, have come to celebrate their child's amazing progress.

Others, like Andy and Karen McDaniel, have come to celebrate a life that was taken too soon. While their son has been gone for nearly seven years,his short tenure at Mangum Elementary School has made an indelible impression on the psyche of the school, inspiring parents and teachersalike to raise funds and volunteer their time at Angels Among Us.

Mangum Elementary alone has raised roughly $100,000 for the Duke BrainTumor Center in the past five years, a staggering amount for a single teamto generate in honor of a single child, said event organizers.

"We are not professional fund raisers. We are parents, retirees and folksnext door who are digging and scratching and asking for every penny," saidAndy McDaniel, who has been involved for five years. "You go to someone,tell them your story, and say, 'here's how you can help us.'"

Karen Lee is another mom who has joined the McDaniels and Lombardis intheir quest to mobilize community support for brain tumor treatment andresearch. When her 6-year-old niece succumbed to a brain tumor in 1998, Leewas inspired to make sense of the tragic event by raising money andawareness in the town of Apex.

Lee organized a group of kids, teachers and parents at West Lake MiddleSchool to seek sponsors who would back them for each mile they would run orwalk in the Angels Among Us 5K event. This year alone, they have raised$11,

000. Teens who raised the most money were awarded box-seat tickets to aCarolina Hurricanes game. In addition, a group of artistically inclinedstudents from West Lake Middle Schools won the contest to design thisyear's Angels Among Us T-shirt.

To celebrate and encourage the involvement of teens in the community,Angels Among Us is sponsoring the first-ever "Teen Block Party." Scheduledfrom 6 to 9 p.m. April 20 at Duke's Wallace Wade Stadium, the event is forteens who raise $100 or more for the Brain Tumor Center at Duke. Teens ages13 to 19 are invited to spend an evening with their peers enjoying music,dancing, food, beverages and special prizes awarded to the top fundraisers.

"This cause gives kids a chance to focus on someone other than themselves,and to work within their communities to make a real difference in the livesof others," said Lee. "For me, raising money gives meaning to my niece'sdeath. I don't understand how children are faced with these issues, and myhope is that someday before I die, we find a cure."

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