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GOLISANO CHILDREN’S HOSPITAL AT STRONG University of Rochester Medical Center Children’s Hospital annual memorial service 3 Child pedestrian injuries peak in the fall 5 20th Anniversary Gala 6 Miracle Weekend a great success 8 Pediatric Treatment Center renovating, expanding Day after day, the staff of Pediatric dures that can last anywhere from a brief Treatment Center at Golisano Children’s 10-minute stint to a full eight-hour Hospital at Strong outfits kids with the workday’s worth of getting better. medicine they need to fight their battles A testament to the center’s healing — battles against cancer, blood disorders powers is 10-year-old Bryce Czekanski, and bone marrow failure, even the who comes each week to receive immune deficiencies they were born with. synthetic enzyme-replacement therapy for Preparing these small soldiers is a Hurler-Scheie syndrome, a rare genetic big job. Each year, the center conducts disorder that affects only one in 115,000 more than 7,000 visits with children from people and that, if left untreated, would Rochester and outlying areas — places cause irreversible damage to his heart, as far away as Buffalo, Elmira, northern liver and spleen, meanwhile clouding his Pennsylvania and Rome. More than half vision and stiffening his joints. of the kids come to receive chemotherapy, Fortunately, Bryce is able to find though the center routinely meets other help here, only minutes from his Fairport needs, too, including delivering medicinal home. August marks five years of his infusions, blood transfusions, enzyme receiving IV-therapy via once-weekly replacement therapy, medical hydration sessions that last six hours each. and many other invasive treatment proce- It’s not a boring visit for Bryce, Continued on page 14 Summer 2007 Dear Friends — People often associate certain holiday seasons with giving and philanthropy. But at Golisano Children’s Hospital at Strong, it feels like every day is a holiday. We are so fortunate to be the benefici- Board of Directors aries of generosity that knows no season. Howard Jacobson, Chair * The critically-needed renovation of our Al Chesonis, Vice-Chair * Treatment Center, the free care provided Dave Christa, Vice-Chair* by us to those who cannot afford to pay Robert G. Jacobson, Vice-Chair* Mark Siewert, Vice-Chair * for medical care, the computers that In the pages of this Golisano Michael Amalfi* allow our patients and their families Children’s Hospital at Strong newsletter, Joseph L. Carbone, D.P.M. to use Katelyn’s Computers (an educa- you will read about our hopes and Jeffery Davis John L. DiMarco II tional and entertainment system called dreams for the future. We are working Wanda Edgcomb GetWellNetwork which we told you we with the community to end obesity, Harvey B. Erdle wanted to provide in last summer’s prevent asthma attacks, stop the Timothy Fournier Roger B. Friedlander issue) … none of these would be possible exposure of children to second-hand Jay W. Gelb without the generosity of our commu- cigarette smoke, and ensure the health, John Glynn nity. The Radiothon, the Telethon, the well-being, and comfort of children Heather A. Goodbody Mike Goonan Stroll, the Golf Classic, the Gala … so who come to us for intravenous therapy. Deborah Haen* many have given so much time, in-kind Enjoy and feel proud of the role all of Michael Haymes goods and services, auction merchan- you have played and continue to play Arnold Klinsky Todd Levine dise, money. We are truly blessed. in our successes and our future. It is Kim McCluski It is hard for me to believe I the future of the children of Rochester, Brian Pasley came to Rochester almost a year ago. the U.S. and the world. And you are why James G. Vazzana And what a year it has been! We have we dare to dream. Faculty launched a new hospitalist service Richard E. Kreipe, M.D. (hospitalists specialize in treating Thomas K. McInerny, M.D. Jeffrey Rubenstein, M.D. hospitalized patients), recruited several of the country’s most promising young Honorary biomedical researchers, introduced the Jeffrey D. Blanchard Judy Columbus region to miracle makers young and old, Yours truly, Diane R. Doniger and sent word of the successes of John L. Green, M.D. Golisano Children’s Hospital around Richard A. Insel, M.D. Joseph E. Klarberg the country and world via our research Donald P. McNelly newsletter, seminar series, Web sites and presentations at national and interna- Nina F. Schor, M.D., Ph.D. Ex-Officio Bradford C. Berk, M.D., Ph.D. tional meetings. Pediatrician-in-chief Steven I. Goldstein Frank Interlichia Douglas Phillips R. Scott Rasmussen * Nina Schor, M.D., Ph.D.* Elsa Steo * Executive Committee 2 Annual memorial service helps familes keep kids close at heart On the heels of Miracle Weekend — the air. Tributes were read and a chil- “Pay it Forward,” which she’d watched a time marked by cheery celebrations dren’s story was shared. Encouragement dozens of times and “tried to live out,” that showcase the children’s hospital’s messages, from parents and hospital her mom said. most dramatic success stories, or faculty and staff, preceded a photo Coming to a memorial service is “Miracle Kids”— came a quieter, closer- slideshow of the children who may be a big comfort, Anderson added. “Grief is knit affair: the children’s hospital’s 4th gone, but are far from forgotten. such a lonely thing; but the moment annual Memorial Service. “The slideshow really is an you’re in that chapel, cut off from the rest The gathering drew more than 175 emotional high point in the afternoon,” of the world and surrounded only by members of hospital staff and families, LeVant said. “For me, it’s always a people who are there for the same reason, all linked by shared desires to remember more than 45 children who, in recent years, each bravely waged but ulti- “ I take comfort in knowing that if I ever need mately lost their battles against illness. “Every child is a miracle, especially to talk, or have a question answered, someone those who must struggle so hard and endure so much,” said Carla LeVant, at the children’s hospital will be there ready senior social worker at Golisano Children’s Hospital at Strong who helps to help. This hospital doesn’t forget people.” families live in the face of loss and is part of the team that plans the service each year. “These children have become solemn reminder of how different each it’s a beautiful camaraderie,” she said. heroes and this is our chance to help loss is for each parent — from NICU Sharing the pain, she added, lightens build lasting legacies, both by honoring babies who never had their home- the load. And your simultaneous compas- them and continuing to care for their coming, to gorgeous high school photos sion for the other families helps to pull families.” of teenagers who, just blooming, were you outside yourself —which is admit- The remembrance service was held lost all too soon.” tedly hard to do in the midst of big loss. Sunday, June 10, at the Interfaith Chapel For many parents, like Nancy “It’s a little easier each day, but on the University of Rochester’s River Anderson, it’s a reunion, a chance to I’ll miss her for the rest of my life,” Campus. Attendees were offered teddy “see” their children again. Anderson said. “Still, I take comfort bears to squeeze during the hour (and It was the second year that Anderson in knowing that if I ever need to talk, take home after); candles flanked the of Ogden attended to remember her 14- or have a question answered, someone altar, shimmering in memory of each year-old daughter, Laura, who died of at the children’s hospital will be there child as poignant musical pieces filled leukemia in early 2005. ready to help. This hospital doesn’t Laura fell sick on her 14th birthday forget people.” Laura Anderson in early October 2004 with an especially In addition to the annual Memorial virulent cancer that conceals itself from Service, the hospital holds a support detection; a few days later, she was night for parents and siblings who are placed in a drug-induced coma. She grappling with first holidays after loss. died in February, never knowing exactly Offered between Thanksgiving and why she was ill. Christmas, LeVant says that the holiday Anderson still lights a candle each meeting is a chance for bereaved fami- night to remember her daughter. lies to “give each other permission” to “I know it’s natural for a parent to talk about — and work through — their be in awe of their own child,” she said. losses with others who can better “That’s what parents do. But what still empathize. strikes me is the letters that poured in It was the holiday meeting — which from her teachers, the stories that came Anderson also attended — that gave her out after she was gone. She touched so the idea to burn a candle in Laura’s honor. many lives.” The flame burns on. Laura loved riding bikes with her older brothers and was incredibly family-oriented; her favorite movie was 3 Candy cigarettes make kids more accepting of the real thing Children who have used candy ciga- products that are made to appeal to chil- tify logos in packaging and advertising, rettes or bubble gum cigars are more dren. Parents should realize that the use such as Joe Camel and Marlboro. likely to try the real thing as they grow of candy look-alike tobacco products Klein acknowledges the complicated up than those who never played with the lets children ‘play’ at smoking, making and varied influences of tobacco use fake tobacco products.

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