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STRONG KIDS NEWSSTRONG KIDS NEWSGolisano Children’s Hospital • University of Rochester Medical Center

SPRING 2009

In this issue

Miracle Kids pp. 4–13

Miracle Makers pp. 14–18

Community Fundraising p. 22

Two years ago, Cory Milburn’s parents held

their son for the first time. They thought

it would be their last.

The doctors had done everything they could do for the extremelypremature baby and everyone held their breath waiting to see if hewould fight his way back.

The next morning, friends and family walked in his honor in theStroll for Strong Kids. And Cory fought back. This year, on May 30,Cory will join hundreds of others to walk in the annual fundraiser. Forthe first time, he will walk on his own two feet.

Every year, Miracle Weekend – a combination of the fundraisingwalk and the annual Children’s Miracle Network Telethon on News10NBC – is a time for the Rochester and Finger Lakes community to pauseto celebrate the miracles in our midst. A baby born much too early whosurvives, even thrives. A boy whose heart is beating more than fouryears after some thought there might not be any hope left. A girl whomight’ve gone blind without the expertise of doctors in her own back-yard. A pre-teen freed from the shackles of a severe and chronicdigestive disease. And a baby who has fought off cancer and four bouts

of meningitis.These miraculous and strong children

are only representatives of hundreds ofother Golisano Children’s Hospital kids

who have been through so much intheir young lives. See page 3 for

more information about Stroll,Telethon and to meet our

2009 Miracle Kids.

Miracle Weekend aCelebration of Children

Photo by: Amanda Padgham

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Dear Friends —

Should we do all of this as multiple sepa-rate institutions or banded together asone?

These are important questions for thefuture of our region. But they are largelyquestions of relevance to adult medicine.Why? Because here in Rochester, all pedi-atricians and pediatric subspecialists aremembers of the Department of Pediatricsof the University of Rochester MedicalCenter. Because URMC Pediatrics’ physi-cians are medical directors andconsultants to all of the region’s neonatalcare facilities. Because URMC Pediatrics’weekly Grand Rounds lectures for health-care professionals are seen “live” atGolisano Children’s Hospital at Strongand Rochester General Hospital and elec-tronically in realtime at Arnett-Ogden andCayuga Medical Center.

Because the Region-wide AsthmaInitiative for children and families involvesURMC, Unity Health System, RochesterGeneral Hospital, Regional CommunityAsthma Network, Rochester City SchoolDistrict, and Monroe Plan for MedicalCare. Because our Ruth A. LawrencePoison Center and our continuing medicaleducation courses for professionals andour pediatric surgery programs serve allof the counties around and beyondMonroe.

Because, while politics and eco-nomics have their place, children can’twait for either one. They must have thevery best safety and quality healthcare thefield has to offer. Their families must haveprivacy, information, compassion, comfort– the very best it is possible to provide. Wecannot do this in our current facility. Infact, it is nothing short of a testament tothe support of you – our wonderful

community – and the outstanding efforts ofour faculty and staff that we manage toprovide the kind of care we provide everyday to the thousands of children who comethrough our doors each year.

If you have any doubt of the need forand impact of what we have alwaysworked to our fullest to provide – out-standing healthcare for all of the childrenin all of our region – read about our veryspecial 2009 Miracle Children. Each oneof them and the families and communitieswho love and support them has a lessonfor us all. Bravery, dignity, humor in theface of adversity, perseverance against thetoughest of obstacles, and the power of afamily’s love – how could we let politicsand economics interfere with giving ourbest to all of Rochester’s children?

Private patient rooms, enough spacefor a family member to stay with eachchild overnight, the ability to get X-raysand MRIs and CTs without leaving thechild-friendly inpatient building, enoughspace around each isolette for familymembers to visit comfortably with apremature newborn, and the kind offacility, training, treatment and illnessprevention programs, and equipment thatwill lure the very, very best healthcareprofessionals to Upstate NY and allow usto continue to work “miracles” for gener-ations of children!

In tribute to and hopes for thecontinued good health of all of ourMiracle Children and their families,

* Executive Committee

Politics and economics. They pervade everything we do.

How many hospitals and hospital beds does upstate New

York need? In what kind of institutions?

How many healthcare professionals should upstate train

and how far should we go to lure them to or retain them?

Board of DirectorsHoward Jacobson, Chair *Al Chesonis, Vice-Chair *Robert G. Jacobson, Vice-Chair*Mark Siewert, Vice-Chair *Michael Amalfi*Joseph L. Carbone, D.P.M.Jeffery DavisJohn L. DiMarco IIWanda Edgcomb Harvey B. ErdlePeter FormicolaTimothy FournierRoger B. Friedlander Jay W. GelbMike GoonanDeborah Haen*Michael HaymesArnold KlinskyTodd LevineScott MarshallGary MauroKim McCluski*Brian PasleySteve TerriginoJames G. Vazzana

FacultyRichard E. Kreipe, M.D.Sue Mahoney Thomas K. McInerny, M.D.Jeffrey Rubenstein, M.D.

HonoraryJeffrey D. BlanchardDave ChristaJudy ColumbusDiane R. DonigerHeather A. GoodbodyJohn L. Green, M.D.Richard A. Insel, M.D.Joseph E. KlarbergElizabeth R. McAnarney, M.D.Donald P. McNelly

Ex-OfficioBradford C. Berk, M.D., Ph.D.Steven I. GoldsteinChad GobelDouglas PhillipsR. Scott Rasmussen *Nina Schor, M.D., Ph.D.*Elsa Steo Nina F. Schor, M.D., Ph.D.

Pediatrician-in-chief

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Every year, children and families touched by Golisano Children’s Hospital cometogether to share their remarkable stories at the annual Children’s MiracleNetwork telethon, hosted by News10 NBC. This year’s five special Miracle Kidswill appear on this live broadcast with their families, as will numerous otherlocal families with extraordinary stories to tell about their experiences withGolisano Children’s Hospital at URMC.

The telethon will broadcast live from the Strong Memorial Hospital lobbyfrom 10 a.m. to 1 p.m., and 7 to 11 p.m., Sunday, May 31. To make a pledge duringthe event, please dial (585) 241-KIDS, or log on to www.gchas.org to make a giftonline.

MIRACLE WEEKEND ‘09

This year’s Stroll and new 5K Run will be held Saturday, May 30, and take placeat Wilson Quad on the University of Rochester campus. The Stroll will culminatewith a carnival, brimming over with rides, games, treats and eats for all ages.This new twist on an old family favorite is sure to be a hit.

Registration for certified 5K Run will be from 8:00 to 9:00 a.m., with the Runbeginning at 9:00 a.m.. Registration for the Stroll will be from 8:00 a.m. to 1:00 p.m.,with the Stroll starting at 9:30 a.m.. Rides and entertainment will follow the walkand continue until 1 p.m. Register online today at www.gchas.org or callGolisano Children’s Hospital’s Office of Advancement at (585) 273-5948.

26th Children’s Miracle NetworkTelethon on News 10NBCpresented by Perkins Restaurants

13th annual Stroll for Strong Kids (and 5K Run)Presented by:

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Dying baby gains strength in his parent’s loving armsPatti and Mike Milburn’s first miraclewas Kyle, conceived with the help ofthe Strong Fertility Center at theUniversity of Rochester Medical Center.He was just 6 months old when thefamily’s second miracle journey began.Mike and Patti and their children fromprevious marriages, Carlyn, age 8, andMike Jr., now 16, were enjoyingbonding with Kyle, when Patti began to show some symptoms of pregnancy.With previous fertility problems, howcould this be?

Patti and Mike went to the doctorand were stunned to learn that she wasalready 17 weeks along. Still adjustingto the idea of another child on the way,Patti’s water broke when she was only25 weeks along. The doctors hoped toprolong the pregnancy for another 10weeks to improve the baby’s chances,five days later, on April 29, the baby

came anyway. Cory was 15 weekspremature and only 1 pound 8 ounces,a micropreemie. Golisano Children’sHospital neonatologists whisked himdown the hall to the neonatal intensivecare unit (NICU). Patti didn’t get to holdher baby boy and her husband didn’teven get to see him.

Cory had what NICU staffers call a“honeymoon period.” Although danger-ously early, he was hanging in there.But on May 15, Mike and Patti’sanniversary, the honeymoon was over.

Cory was struggling with the venti-lator, and his central line, through whichhe got a cocktail of life-saving medica-tions, began failing. Timothy Stevens,M.D., M.P.H., medical director of theNICU, told the family they were runningout of options. They needed to preparethemselves for the possibility that Corywouldn’t make it.

Stevens gave Cory steroids to helphis lungs, and he and a team of special-ists worked to get a new central line intoCory. It took five hours and Cory wasexhausted and barely holding on.

“I sat in the NICU next to Cory’sbed until midnight, saying, ‘Not today,Cory. Today is not the day to go.’ Corykept fighting for his life,” Patti said.

The next two weeks were a blur ofmedical interventions and endless hoursin the NICU. Then came June 1. Thehospital called at 6 p.m. to tell theMilburns they should come in and saygoodbye. It didn’t look like Cory wouldmake it.

“When we walked in, Cory was apurplish-blue color and had a team ofdoctors and nurses working on him,”Patti said. “I won’t forget Heather(Goetzman, P.N.P.) said, ‘Get right inthere and you can talk to him.’ It was

Cory Milburn Miracle Kid


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the first time we had been able to getthat close to him,” Patti said.

Patti leaned in to her baby boy andtold him, “You fought hard enough forus, so if you have to go, it’s OK.” Shelooked around at the nurses and doctorstrying to save her son and saw tears intheir eyes. The nurses and Sanjiv Amin,M.D., F.A.A.P., a neonatologist in theNICU, suggested Patti and Mike holdtheir son while still connected to theventilator. It was the first time they’dbeen able to do so. He was so tiny andfragile yet so beautiful.

Amin had given Cory additionaldoses of steroids to see if the medica-tion would help, but he was clear thatCory’s prognosis was grim. Patti andMike wanted to have Cory baptized,so a hospital chaplain performed thebaptism with the nurses and doctorsgathered around them. Mike held himand Carlyn caressed his tiny head,saying she didn’t want to let her babybrother go. Kyle was brought in so, oneday, he could be told he saw his babybrother. The nursing staff closed theirsection of the NICU and let the familyhave a few parting moments with babyCory.

Amin warned them that, if hesurvived, Cory would be at risk forsignificant developmental problems as a result of the aggressive steroidtreatment.

“I was thinking it would be like amiracle for him to survive because weexhausted routine treatment options,”Amin said. “He was gradually goingdown hill. The NICU staff was ques-tioning whether we should prolong theinevitable. But the family wanted to seeif a second dose of steroids would help,so we kept him going until we could seethe effect of steroids a few hours afteradministration.”

The Milburns were told they couldhold Cory until he passed. Around11 p.m., the Milburns’ extended familystarted to leave. They planned to walk in the hospital’s annual Stroll for StrongKids the next morning no matter what.

Patti and Amin kept an eye onCory’s vitals the whole time they held

him, expecting his oxygenation to startto drop off. But miraculously, his vitalsigns improved. They placed Cory backin his incubator, and his oxygenationgradually improved over the next hour.

From that day on Cory took babysteps to improvement. He endured 21days of the steroid treatment that thefamily knew could cause developmental

disabilities. Eventually, he was able tobreath on his own and the family couldhold him. His older sister, Carlyn, andbig brother, Mike, visited. And on Aug.10, 2007, two days before what wouldhave been his due date, Cory finally gotto go home. He was on 11 differentmedications, but he was home.

At the suggestion of the medicalteam, Patti and Mike kept Cory isolatedfrom public places and visitors for therest of his first year of life. Some friendsjoked that they didn’t believe he existedbecause they’d never seen him. But onhis first birthday, Patti and Mike threwan enormous party in their Spencerportneighborhood, inviting 100 friends andfamily members to meet precious Cory.He was the star, the Miracle Kid.

A year later, he is an outgoing andhealthy child. He has very few develop-mental effects of the lifesaving steroidtreatment he received. He has sometrouble with his eyesight from retino-pathy of prematurity (ROP), a commonproblem among preemies. But he’s awalking, talking, gregarious toddler.



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3-years-old, Taylor needed a dailyreminder of where her toothbrush was.

Despite a lifetime of unexpectedhospitalizations due to flare-ups – spikes

in Taylor’s symptoms that often sent herto a hospital – and prescription drugsthat seriously impinged on Taylor’s life,Taylor and her mom maintained a rosyoutlook as she grew.

“Parents don’t realize that whenyou’re stuck, you have to make the bestof everything. The more upbeat andpositive you are, the better,” Reginasaid.“It’s just common sense.”

Regina brought Taylor’s bedroom toher when Taylor was in any one of the

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Imagine spending ten years in and outof hospitals with life-threatening condi-tions. At 12 years old, Taylor Randallhas spent more time in hospitals thanmost people spend in a lifetime.

“I’ve learned a lot after 10 years of Taylor’s illness. For most of her life,she’s really been sick all year long withonly a few months of good health,”explained Regina Randall, Taylor’smom.

When Taylor was 3 and living inFlorida, she was diagnosed with Crohn’sdisease – a genetic autoimmune diseasein which the immune system attacks thegastrointestinal tract, causing it to swell– and ulcerative colitis, a form of along-term digestive disease that alsoinflames the colon. Crohn’s disease canmanifest as colitis.

Taylor was prescribed steroids to deal Crohn’s and colitis. While thesteroids reduced inflammation andsuppressed Taylor’s immune system,they also had many negative side effects,including weight gain and frequentmemory loss. Regina recalls that at

High-spirited girl gains a new shot at life

Taylor Randall Miracle Kid

various hospitals she grew to know over the years (including a hospital inFlorida, Texas Children’s Hospital,Children’s Hospital of Philadelphia and Golisano Children’s Hospital at the University of Rochester MedicalCenter). Regina would draw smileyfaces on the board and bring in familiaritems like Taylor’s bedside lamp.

Even though Taylor and her momtried to keep their spirits high, Taylor’scondition worsened over time. TheRandalls eventually left Texas, wherethey had initially resided and soughtcare at Texas Children’s Hospital, andmoved to Painted Post, near Corning,N.Y., so they could be closer to familyand close to another highly regardedchildren’s hospital – Golisano Children’sHospital.

When Taylor’s ankle shattered inday care after kicking a soccer ball inApril 2007, questions were raised as towhether being steroid-dependent washelping Taylor or hurting her. Doctors atGolisano Children’s Hospital, includingNatalie Sikka, M.D., a pediatric


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Taylor did very well for awhile. Her bowel function had returned andshe was recovering just fine, accordingto Pegoli. Taylor wrote an essay for awriting contest at the Corning Libraryabout her experiences, which shehumorously titled “The Day I Gave MyColon to the Dudes in Blue”: “We triedto have fun,” Taylor wrote, “like thetime my mom made a tree out ofconstruction paper and glued it to theceiling over my bed. It was coolbecause it was fall outside, so as timewent on the leaves fell on top of me just like they fall off the trees outside.My mom said I shouldn’t miss theleaves falling.”

Despite missing an average of 50days of school a year for her medicalcomplications, Taylor was named one of the six finalists out of 164 entrants inthe writing contest. Later in the piece,Taylor adds that her mom and the nursesat Golisano Children’s Hospital loved tomake things for Taylor to make herroom feel more comfortable.

Just as Taylor was closing the bookon her life as a frequent patient and wasadapting to being a kid, in May 2008,something started going horribly wrong.Taylor began vomiting violently.

Regina was adamant about travel-ling 1 1/2 hours to Golisano Children’sHospital. Having had so many closecalls with Taylor, she knew somethingwas seriously wrong and she wantedTaylor cared for by top-notch pediatricspecialists. Scar tissue has twistedaround Taylor’s small bowel, making thetop part look like a balloon and thebottom part look like a dime, as Reginadescribes it. Nothing could get throughTaylor’s intestine.

gastroenterologist, decided to use a new technology that has only recentlybecome available: a capsule endoscopy,which involves swallowing a small pillthat moves down the intestinal tract andcaptures images along the way.

This technology was pivotal inTaylor’s ultimate diagnoses, sinceneither an endoscopy, in which a longtube is inserted through the mouth andcan go down as far as the top part of the small intestine, nor a colonoscopy,which goes up the other way and canonly reach up where the small and largeintestine meet, could provide doctorswith a clear view of Taylor’s smallintestine, Sikka explained.

Prior to this surgery, Taylor’s symp-toms had waffled between beingindicative of Crohn’s disease, which canoccur anywhere between the mouth andthe anus in the intestinal tract, andulcerative colitis, which is confined tothe colon, said Sikka. Once doctorscould see that Taylor’s small intestinewas normal through images from thecapsule endoscopy, the doctors knewthat Taylor’s colon was the onlydiseased part of her body. They deter-mined that Taylor did not have Crohn’sdisease; she only had ulcerative colitis.

Since ulcerative colitis is anisolated disease that only affects thecolon, the doctors determined thatTaylor a colectomy was the best optionfor Taylor. The surgery would removeTaylor’s colon – the section of her intes-tines that was causing her so muchtrouble.

Taylor was referred to WalterPegoli, M.D., professor and chief ofPediatric Surgery at Golisano Children’sHospital. In Oct. 2007, Pegoli performeda total colostomy to remove Taylor’scolon and a J-pouch ileoproctostomy – a surgical construction of an openingbetween the lowest part of the intestineand the rectum. After about threemonths of healing and using acolostomy bag, in Jan. 2008, Taylorwent in for a second surgery to takedown the opening in the body and hookthe two ends of Taylor’s small bowelback together.

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If Regina had waited much longer,Taylor’s small bowel could have perfo-rated and split and Taylor may have hadto have her bowel cut out. This couldhave caused serious complications,since Taylor’s body was still healingfrom her earlier operations. Reginarecalls the fear she felt, but she foundsome comfort in seeing that the oper-ating room was crowded with healthcare professionals, all working hard tohelp Taylor, much like how Taylor’searlier surgeries had been.

Miraculously, the small bowel hadnot perforated and Pegoli was able tocut the scar tissue that was twistedaround the small bowel, leaving thebowel intact. Pegoli said the operationwas very delicate and serious. Reginarecalls that despite the severity of thisoperation, Taylor was up and walkingaround just a day later. Taylor was eagerto recover and get back to the normallife she was on her way to having.

Taylor felt very safe when she wasrecovering: she and her mother hadcome to see Golisano Children’sHospital as a second home. The nursesat Golisano Children’s Hospital havealways gone “above and beyond,”according to Regina. “The nursing staffcontinued on page 23


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Jason Gaines Miracle Kid

Rhonda Ellison was six months preg-nant when she and her husband, JamesGaines, got the kind of news all parentsdread going into an ultrasound: some-thing was wrong with their baby. Theyneeded to go to the Children’s HeartCenter at Golisano Children’s Hospital.

The couple consulted with a cardi-ologist and were devastated to learn that Jason had hypoplastic left heart

syndrome, a condition that meant thewhole left side of his heart – aorta,aortic valve, left ventricle and mitralvalve – was underdeveloped.

The left side of the heart does thecritical job of pumping oxygenatedblood to the rest of the body. Hypo-plastic left heart syndrome is the leadingcause of death from cardiovasculardisease during the first two weeks of life

and is responsible for about 2 percent of all congenital heart defects. Withoutsurgical intervention within days ofbirth, babies with the syndrome die.

Initially fearing the worst, Rhondaand James were relieved when Dr.(George) Alfieris (chief of pediatriccardiac heart surgery) assured them thatthere was a medical procedure that couldincrease Jason’s chance for survival.

On Sept. 12, 2004, Rhonda wentinto labor and she delivered almostwithout incident.

“I got to hold him, and he cried,just like my other babies. He was actu-ally breathing on his own,” Rhonda said.

Alfieris and his specialized teamhad three goals going into the firstsurgery: to open the wall between thetop chambers of the heart so that boththe oxygenated and blue (or unoxy-genated) blood in the heart could mix;to rebuild a very small aorta and allow it to receive blood from the rightventricle; and to place a shunt or tubefrom the aorta to the lungs so that bloodcould get to Jason’s lungs.

“His first of three planned surgerieswent very well, however, his breastbone was not put back together immedi-ately because we were concerned aboutswelling. His chest remained open forabout five days after surgery,” Alfierissaid. “He’s a really strong little boy.”

Caring for Jason was not the sameas it was for the couple’s older children(Jason was one of 11; he now has a littlesister, too). Rhonda and James werenervous about keeping him safe, but hiscardiologist, Cecilia Meagher, M.D.,reassured them Jason was doing well.

Six months later it was time forJason’s next surgery. The second surgeryconnected the blue blood usuallyreturning to the heart directly to thelungs. Jason pulled through the surgerywell but he developed a chylothorax or abuilding up of lymphatic fluid in the chest

Boy born with half a heart survives and thrives


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cavity, a serious complication if notcaught early. Jason’s team, whichincluded Regina Cable, N.P., caught thecondition early. A chylothorax candevelop in children after open heartsurgery due to high vein pressure in thelungs. To treat it, the fluid is drained fromthe lung cavity and then the child isplaced on a low-fat diet.

“Reducing fat consumption isimportant because fat is absorbed intothe lymphatic system and – in this situa-tion – then leaks into the lung cavitymaking it difficult for the infant tobreathe,” Cable said. “Jason was on alow-fat diet for about three months.”

Until Jason’s lungs were matureenough to handle the final procedure,Meagher kept an eye on his heart’sdevelopment, making sure he would beready. Other than some routine child-hood illnesses, Jason was doing well.

On Nov. 3, 2008, Jason had his thirdopen-heart surgery. During a seven-hoursurgery, Alfieris finished routing Jason’sblue blood past his heart and to hislungs and allowed the right side of hisheart to just pump oxygenated blood tothe rest of Jason’s body. The surgerytook seven hours, but it felt like an eter-nity to Rhonda and James.

“The surgery went well. It was only a few days before we were able tounhook the ventilator,” Alfieris said.

Unfortunately, Jason was unable tokeep his oxygen level high enough, sohe was reattached to a ventilator. But hisblood oxygen levels remained very low.

“Then he had some changes in hislungs that scared all of us and requiredan emergency procedure in the pediatriccardiac intensive care unit (PCICU),”Meagher said.

An ultrasound of Jason’s heartrevealed a clot in the tube that was taking Jason’s blue blood directly to thelungs. Jason was given a clot-dissolvingmedicine and that decreased the size ofthe clot.

Daniel Miga, M.D., a pediatric cardi-ologist, took Jason to the cardiac catheter-ization lab to determine the cause of hislow oxygen levels and discovered that hisleft lung was not picking up oxygen.Jason’s heart was functioning well, but hisleft lung had completely collapsed.

“They kept trying things, but theydidn’t know a magic fix. That’s whenthey decided to open up his chestagain,” Rhonda said. “His dad called thefamily to come to the hospital, fearingJason, who was clinging to life, wouldnot survive. I remember Dr. Meagherhugged me. The fear was paralyzing.”

Jason’s breast bone was reopened to give his lungs more room to expand.When Rhonda came out of the PCICU,Jason’s extended family was there.

It was reassuring for Rhonda to havethem there, but the reason for their pres-ence was unnerving.

“It was very scary, but I didn’t giveup on him. I never do,” Rhonda said. “I knew in my heart that my son wouldpull through. I knew he wasn’t goinganywhere.”

Jason stayed in the hospital formore than seven more weeks and hischest was left open for the majority of that time. A special wound healingmachine was placed on his chest to helphim heal and allow him to breathe offthe ventilator despite his breast bonebeing separated.

“Dressing changes in this situationcan be very frightening especially to a 5 year old but Jason handled it like a trooper,” Cable said. “When Jason’swound was close to being healed he wasdischarged home.”

Rhonda still had to change his incision bandage once a day and bringhim back to the hospital weekly. Today,his parents say the whole experiencehasn’t really fazed him, even if his momand dad continue to worry about him.

“When I check the area, Jason willoften ask, ‘How does it look? Am I OK?Does it look good? Or, are we going backto the hospital?’” Rhonda said. “He isn’tscared by any of it. He’s our miraclechild.”

Photo by: Amanda Padgham Photo by: Amanda Padgham

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Brooklyn Spencer Miracle Kid

Brooklynn Spencer’s mother Samanthaknew something wasn’t right. The 8month old had the flu recently, but ithad been four weeks. She should havebeen better. The Elmira mother of fourpushed for blood tests in early October2007. A few hours later, there was aknock at the door.

A physician – not even Brooklynn’sown pediatrician – came to the house

as soon as her blood tests came back.Brooklynn’s white cell count, whichshould have been about 5,000, was56,000, her hematocrit, which shouldhave been 35 to 40 percent, was 13percent and her platelet count, whichshould have been more than 150,000,was 13,000. Those levels were soconcerning, she needed to get special-ized care immediately.

Sam and her husband Bill rushedwith Brooklynn to Golisano Children’sHospital at the University of RochesterMedical Center, not knowing how longthey’d be gone or whether they’d bebringing their baby girl back with them.Acute Lymphoblastic Leukemia (ALL)had taken over Brooklynn’s bonemarrow, so she wasn’t making anynormal blood cells. But it was the mostcommon pre-B cell type, enough for theSpencers to hold on to a lot of hope.

“It’s one of the better ones to have,”Sam said. “You don’t want any, but ifyou have to have it, it’s one that’s morecurable than most.”

Still, treatment has not been easyon Brooklynn. In fact, she’s had one ofthe most difficult to treat cases of ALLGolisano Children’s Hospital has everseen. But it wasn’t the cancer that shestruggled with; it was bacteria many ofus carry in our intestines with no symp-toms: Vancomycin-ResistantEnterococcus (VRE).

Brooklynn was three weeks into theinduction phase of treatment with herpediatric oncologist Laurie Milner, M.D.,the first time she got sick with VRE.

“She went to sleep and she justdidn’t wake up,” Sam said. “The nursecame in and changed her, did vitals andshe didn’t move. Usually, the cuff wouldmake her scream.”

The nurse knew something wasvery wrong, so she called the doctors,who decided to do a spinal tap to checkBrooklynn for meningitis in addition tothe VRE sepsis she had already devel-oped. It was positive and it was bad. It was resistant to pretty much everyantibiotic.

Brooklynn was moved to the pedi-atric intensive care unit (PICU), and theSpencers were told to expect the worst.Mary Caserta, M.D., a pediatric infec-tious disease specialist, knew there hadto be a way to fight the infection,

Toddler’s mysterious meningitis trumps cancer threat


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so she delved into old case studies andcalled colleagues across the country.She came across a case of a prematureinfant with VRE meningitis whosuccessfully fought it off with an oldantibiotic that isn’t often used anymore.Caserta added it to a cocktail of fourantibiotics and started treatment.

“It was hard because one of themost effective antibiotics for that type of meningitis required Brooklynn’simmune system to fight the infection,but her immune system was completelyknocked out by her cancer treatments,”Caserta said. “We threw everything wehad at her.”

Brooklynn started getting better.Her blood and spinal fluid were free ofthe bacteria, but it wasn’t the last timethe family thought it was the end forBrooklynn. She had seven bouts of VREand four bouts of meningitis. And eachtime, Sam played a large part in savingher.

“She knows Brooklynn inside andout. If she says something isn’t right, weknow we have to do something,” Milnersaid.

Because of all the infections,Brooklynn missed 12 weeks of chemo-therapy, which Milner called “nerve-wracking.” The induction phase ofchemotherapy treatment is very impor-tant to fighting leukemia. But the cancerhasn’t come back.

“It’s amazing that she hasn’trelapsed, given all the delays in herchemotherapy and reductions in herchemotherapy doses,” Milner said. “I still worry. Because of the meningitis,we couldn’t give much of the chemo-therapy directly into the spinal fluid theway we usually do.”

Brooklynn finally went home June9, 2008, nine months after she wasadmitted for what is usually a month-long induction phase of chemotherapy.She didn’t remember her house, her cribor her dog, but it didn’t take her long toreadjust. Her siblings, 3-year-old Iain, 5-year-old Abagail and 8-year-old Hunter,were so excited to have her home, they

had to be constantlyreminded to take a stepback or they’d smotherher with their affection.

Brooklynn wasn’thome long when shelanded back in thehospital again. Once,it was for pancreatitis.Another time, it was ablood clot in a neck vein.And once, it was kidneystones. However,Brooklynn’s mostcomplicated problemafter she finally wenthome was getting themedications she neededto save her life. Hercentral line kept gettinginfected and scar tissuefrom previous lines madeit difficult to put in newones. She had sevencentral lines in just eightmonths.

She’s also had three peripherallyinserted central catheter (PICC) lines,the first one in her foot because theycouldn’t get anything else in anywhere.She had that one for 15 weeks, untilOctober, when she was scheduled to get another central line placed throughsurgery. After two hours of trying,Walter Pegoli, M.D., chief of PediatricSurgery, came out and told the Spencersthe scar tissue from other placementsmade it impossible for him to put in a new one and suggested they try inter-ventional radiology. Interventionalradiology successfully got a line into the right side of her neck, and she wenthome a day later. A week later, anothercomplication – a blood clot – forced theremoval of that one, and a PICU teamhad to work hard to get a new PICC linein the left side of her neck.

A month later, while staying at theRonald McDonald House, practically asecond home to the Spencers,Brooklynn pulled the PICC line outherself. “It’s one of those things where

you had to laugh. It’s just been so muchtrouble,” Sam said. Once again, aftermuch effort, the PICU team camethrough with a PICC line in her foot.

Brooklynn still has a long road aheadof her. Because she was so sick for solong, she missed important developmentalmilestones, like eating solid food. Shenow has a severe aversion to anythingbeing put in her mouth, so she gets mostof her nutrition from a tube in herstomach. But she’s growing and gettingstronger and more curious every day.

Brooklynn’s chemotherapy treat-ment doesn’t end until November, butshe is already a miracle for everythingshe’s been through.

“I’m so thankful that we live soclose to Golisano Children’s Hospitalbecause they’re so good. Two hoursdoesn’t seem close, but look at all thefamilies who have to leave their state,”Sam said.


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Tea Papke Miracle Kid

Today Tea Papke is a sixth grader atVictor Intermediate with three years ofexperience in all-star cheerleading underher belt and a heart of gold. However,if her father hadn’t happened to benddown as Tea stood up six years ago,Tea’s life could have taken a completelydifferent turn: she could have goneblind.

When Tea was 5 she banged intoher father’s glasses and he noticed anunusual bump and grew concerned. ThePapkes took Tea to a dermatologist, whoopted to leave the bump alone, since itwasn’t hurting Tea. A year later, shecomplained of an aching pain aroundher eyes during a first-grade eye test.

Victor girl undergoes major cranio-facial surgery to save her sight

The Papkes went back to the dermatolo-gist, who recommended Tea’spediatrician, Kevin Klossner, M.D., ofthe Penn-Fair Pediatric Group perform aCAT scan, which combines special x-rayequipment with sophisticated computersto get clearer images of internal parts ofthe body. A few days later, Klossnercalled Amy and revealed Tea’s diag-noses: fibrous dysplasia.

Fibrous dysplasia is a geneticdisease in which bone is progressivelyreplaced with a softer expansible bone.This condition is extremely rare andthere is no known cure. The tumor-likegrowth is generally benign, but locallyaggressive, which means it would grow

significantly if not removed. Klossnerrecommended the Papkes go to JohnGirotto, M.D., a pediatric plastic surgeonwho specializes in craniofacial anom-alies and Howard Silberstein, M.D., apediatric neurosurgeon, both at GolisanoChildren’s Hospital at the University ofRochester Medical Center.

“We figured we’d have to go out oftown for a plastic surgeon and a neuro-surgeon,” said Amy. “Most people don’tthink of Golisano Children’s Hospitaluntil their child has been there.”

Girotto found Tea’s tumor wasgrowing inward, toward her optic nerve.Because Tea’s monostotic fibrousdysplasia was only in one bone, if thesurgeons removed enough around thearea of the tumor, Tea would be in theclear. If it wasn’t removed, however, thetumor would compress Tea’s optic nerveand blind her. Girotto explained that thetumor would also continue to grow as adeformity that eventually covered Tea’sentire face and that it could potentiallycause brain damage. Leaving the tumoralone was no longer an option – it hadto be removed.

Girotto and Silberstein told thePapkes about the procedure and what to expect. Tea and her family are“delightful folks,” said Girotto, but healso sympathized with what they weregoing through. Girotto expressed thatnaturally, any parents would be upset if a neurosurgeon and a plastic surgeonsaid their little girl had to undergomassive reconstructive surgery toremove a tumor moving toward herbrain. Tea’s parents did not want toworry Tea with scary details about theoperation, but the first-grader was insis-tent. “Going through a situation like thismade her grow up faster,” said Amy.

On April 8, 2004, the day of Tea’soperation, Tea, her parents and herbrother were joined by Tea’s grandpar-ents and other local family members.Tea’s aunt from South Carolina alsomade the trip up to offer her support.Tea was given a sedative and Amycarried her daughter into the operating


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13

room. As Tea sat on the operating tablewith a mask over her nose, she held hermother’s hand until she fell into a deepsleep.

Tea underwent the day-long proce-dure and Girotto and Silbersteinproceeded with the huge coordinatedteam effort while the Papkes anxiouslywaited with other families for their chil-dren, who were all undergoing equallynerve-racking operations. “We allcomforted one another,” Amy explained.Silberstein was careful to get the brainand skull out of the way while Girottoremoved the tumor and reconstructedthe eye socket and part of the forehead.Once the operation was over, Tea wastaken to the pediatric intensive care unit,where she rested for about a week. She

recovered at home for a week and thenreturned to school a few hours a weekuntil she was ready to go back to fulldays of school.

Now fully recovered, Tea hasgrown into a compassionate young lady.“We gave her some money forChristmas. She figured out how muchmoney she had to give and decided todonate all of it. I explained, ‘Well, youreally don’t have to give away all ofyour money,” Amy chuckled. Tea hasalso donated her hair to “Locks ofLove” twice and assists with a specialneeds cheerleading team at PremierCheer, where she is a cheerleader.

Tea still visits Girotto about once ayear for a CAT scan to make sure thereis no leftover soft tissue that could grow

into a larger problem. “It’s been fiveyears and I haven’t seen anything yet,so I guess we did a pretty good job,”Girotto said.

Amy finds a lot of comfort inhaving a hospital with such highly-qual-ified health care professionals so closeto home. She explained that the Papkesoften run into Silberstein at their localice cream store in Victor and see Girottoout as well. Amy finds it amazing thatwith so many patients, both doctors stillremember Tea by name. Tea is doinggreat and the Papkes have found solacein knowing that such a rich resource liesright at their door steps.


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Golisano Children’s Hospital couldn’t providethe top-notch care it does without thecommunity’s support. Community groups,companies, individuals and families routinelyrally together for the region’s children, andthe hospital is eternally grateful. Every dona-tion has a story behind it and every fundraiserstarted for a special reason.

MIRACLE MAKER AWARDS

There are no champions for childrenquite like parents. Parents are an essen-tial part of the Golisano Children’sHospital community. They rally friendsand families together, share stories fromthe heart and tirelessly work as advo-cates for our future generation. Thisyear, a special category has been createdto celebrate the remarkable efforts thatparents have made to help GolisanoChildren’s Hospital at the University ofRochester Medical Center. There isn’t a more worthy recipient of the first-evergrateful parents Miracle Maker Award

Team Taylor wins by a landslide

Outstanding Commitment by Grateful Parents

This year, the hospital has chosen five trulyexceptional people and groups to presentwith Miracle Makers Awards for their effortson behalf of children and families in need. Theaward-winners are our neighbors and ourfriends, our family members and ourcolleagues. Yet with a remarkably strongcommitment to helping children and an

immense amount of work, they’ve chosen tobecome real, live heroes. Our hope is that inreading these stories, you draw inspirationand comfort in the power and drive ourcommunity holds to improve the lives of ourfuture citizens.

than Jennifer and Tim Brush.Jennifer and her husband, Tim,

have turned what started out as a smallgathering to remember their daughterTaylor into one of the most anticipatedand well-attended fundraisers of theyear for Golisano Children’s Hospital:the Taylor Brush Dinner Dance. TeamTaylor, which Brush affectionately callsthe group of friends and family thatsupport Jen and Tim’s efforts, has raisedmore than $115,000 for GolisanoChildren’s Hospital.

Now in its seventh year, the TaylorBrush Dinner Dance is attended byhundreds of people annually. “It’s beenkind of a snowball effect. I invited myfriends, then they invited theirs, and thenext thing you know, we had 335 peoplewho were braving a snowstorm tocome,” said Jennifer Brush, referring to the 2008 event.

The event has a dinner and isfollowed by music from dedicated DJ David E., who has provided musicfor the event for years. The raffle boastsa variety of items, all donated by thecommunity. This year’s event auctionedoff a diamond necklace, worth $2,000and donated by Jerry’s Jewelers, aNintendo Wii donated by Bob Jacobsonof B&L Wholesale Supply, and a garage

door and opener donated by Brush’sfamily’s company, Tracey Door.

“We try to make the event a funnight out. We show a movie every yearto share local stories. Even thoughTaylor’s not here, we want to showcasea few of the many success stories outthere,” said Brush. Brush, a third gradeteacher, reaches out to other teachersand students to find stories about kidswho have been helped by GolisanoChildren’s Hospital and to encouragethem to get involved.

A little bit of encouragement goes along way. Brush started attending chil-dren’s hospital events when a friend gota letter about the Stroll for Strong Kidsand suggested starting a team. Brushinvited ten family members and friendsto join the walk, ironed “Team Taylor”on some t-shirts, and a dynamicfundraising team was born.

Brush emphasizes that it is actually“Team Taylor” that has earned theMiracle Maker Award, not just Brush.Ever a team player, Brush recognizesthat by working together, miracles canhappen.

“I know that we’re the ones gettingthis award but it’s really not just us,”insisted Brush. “It’s our friends, ourfamily: we’re just a very small part of it.It’s really the team. ‘Team Taylor’ hasbeen incredible, and it’s a small testa-ment to the impact Taylor has had oneveryone in this community.”

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After four years of exponential growth,the Fairport Music and Food Fest(FMFF) has become one of the mostanticipated community fundraisers ofthe year. With dozens of bands, foodvendors galore and numerous activitiesfor kids culminating at the end of thesummer along the Erie Canal, whowouldn’t want to attend this annualknock-out fundraiser?

The event, which has raised morethan $150,000 for the University ofRochester Medical Center’s GolisanoChildren’s Hospital in just four years,is an outgrowth of what started and stillcontinues to be the Ed Kaufman GolfTournament, also a benefit for GolisanoChildren’s Hospital. “The event is great,but we wanted to find another vehicle to generate more revenue,” said AndyMcDermott, co-organizer of FMFF.

“We tried to figure out a good wayto throw a party without ruining ourcollective lawns,” joked Rob Burch,who shares the responsibility of organ-izing the event with McDermott.

The Village of Fairport extendedtheir support for a music festivalfundraiser along the Eric Canal, offering

to close off a section of Lift BridgeLane from noon to dark to make spacefor the bands, vendors, kids’ activitiesand all of the attendees. The village andorganizers also provide three stages andsound for area bands, who perform atthe event for free. By the time Augustrolls around, the event garners roughly170 participants, including vendors,bands, girl scouts and cub scouts,Fairport sports teams and many otherdedicated supporters.

The community’s support for thefundraiser has helped make it wildly

successful. The first year, FMFF raised$13,700 for the hospital and eachfollowing year, the event has broken itsprevious record. Last year, the eventquadrupled the first year’s total, netting$57,500.

The growth of this event is no fluke.McDermott and Burch spend about tenmonths a year planning for FairportMusic and Food Fest. The two are joinedby about ten committee members, whohelp plan from the beginning of Januaryuntil the day of the festival, which willbegin this year at 12 p.m., Saturday,Aug. 29.

“It’s a hobby for us, so it reallydoesn’t seem like work,” explainedBurch. One would be hard-pressed tofind a more worthwhile hobby thanhelping the children in our community.

For their hard work, ambition andenthusiasm, Golisano Children’sHospital is proud to honor the commu-nity group that organizes Fairport Musicand Food Fest with a Miracle MakerAward. For more information on thisyear’s 5th annual festival, visitwww.fairportmusicfest.com.

Fairport Music and Food FestSpirited community group is on a roll with giving

Outstanding Commitment by a Community Group

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Tops never stops giving kids more

Outstanding Commitment by a CMN sponsor

Tops Friendly Markets sticks to a clearand straightforward belief: keep thegiving local. Through its fundraisingand volunteering, hosting and spon-soring events, and an ever-strong desireto help our region’s children, Tops hasbeen awarded this year’s OutstandingCommitment by a Children’s MiracleNetwork (CMN) Sponsor.

Since Tops became a CMN sponsorin 2005, the company has raised nearly$200,000 for Golisano Children’sHospital at the University of RochesterMedical Center. More important thanthe money Tops has raised, though,is the vigorous commitment Tops hasmade to help children in the Rochesterarea.

“We have a simple philosophy:‘Living here, giving here,’” said AndyBrocato, senior manager of communityrelations and special events at TopsMarkets.

The lucid motto sets the tone forunderstanding the relationship that hasdeveloped over the years betweenGolisano Children’s Hospital and Tops.

Tops goes above and beyond to supportthe children’s hospital, providing volun-teers and food for events, holdingpromotions and shopping sprees at itsstores, sponsoring the annual Drive forMiracles Radiothon and Children’sMiracle Network Telethon and hostingits own fundraising events like MonteCarlo Night.

“I know when I ask, ‘Can you help us out?’ their answer is always anenthusiastic “Yes,” said Betsy Findlay,associate director of the Office ofAdvancement for Golisano Children’sHospital.

Tops associates recognize theimportance of giving back to thecommunities they live and work in,especially when they see what a differ-ence Golisano Children’s Hospitalmakes to this community. It was naturalfor Tops to join the Children’s MiracleNetwork for just that reason. Thenetwork, which includes 170 children’shospitals nationwide, is wonderfullywide-spanning institution that forgesbonds between children’s hospitals andthe corporations, like Tops, who want to help them. The special connectionbetween Tops and the hospital goes evendeeper because one of Tops’ associates,Eric Czekanski, has a personal connec-

tion with the hospital. Eric is not only a manager at Tops, but he is also agrateful parent.

Eric’s son Bryce has a rare geneticdisorder, called Hurler-Scheie syn-drome, which consequently bringsBryce and Eric to Golisano Children’sHospital every week for syntheticenzyme-replacement therapy. Bryce has gotten to know the hospital verywell over the past six years he’s beenreceiving his weekly IV-therapy, whichlasts six-hours each session.

Bryce has created artwork for theMonte Carlo Night invitations and forKards for Kids, a special set of holidaycards that Tops sells to raise money forthe children’s hospital. Bryce and hisdad have shared their story at children’shospital events like Radiothon and theopening of the Pediatric OutpatientTreatment Center in 2008. TheCzekanskis’ dedication has inspiredemployees at the 19 Tops stores thatsupport Golisano Children’s Hospital to be enthusiastic advocates for thehospital.

“We’re extremely honored andextremely humbled to join thewonderful sponsors who have beennamed Miracle Makers in past years,”said Brocato, “Of course, the award issecondary. We don’t support GolisanoChildren’s Hospital for recognition, wedo it for the right reasons – for the goodof the community.”

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William Levine has been a generousdonor to Golisano Children’s Hospital at Strong for the past 14 years. His nameis revered throughout the University ofRochester for the generous spirit withwhich he gives back to his community.We are proud to celebrate Levine’scontinuous generosity in the name ofour community’s children by presentinghim with the Miracle Maker Award forOutstanding Commitment by anIndividual.

“Bill has always put our communityfirst. His generosity with the Universityof Rochester Medical Center reflects abroader understanding of the importanceof investing in our region’s future,” saidBradford C. Berk, M.D., Ph.D., CEO ofthe Medical Center.

Over the years, Levine has been anincredible contributor to our region’schildren, including sponsoring many ofthe children’s hospital’s galas andserving as honorary chair of the gala in2004. But Levine’s most transformativeand generous gift to Golisano Children’sHospital was helping to fund one of thechildren’s hospital’s crowning achieve-ments: the William and Mildred LevinePediatric Surgical Suite.

The suite, which opened in June

2006, helps the more than 6,600 childreneach year who undergo surgery atGolisano Children’s Hospital, byproviding pre- and post-operative carethat is specifically catered to meet achild’s needs.

The William and Mildred LevinePediatric Surgical Suite is recognizably a space for children and their families,providing a seaside background in thehalls and the waiting room to create acalming ambiance for kids. A pre-opera-tive room in the suite offers families aspace to be with their children minutesbefore surgery. After surgery, parents canspeak with their surgeon and then go to a Post Anesthesia Recovery Unit, wheretheir child is being monitored. Before thesuite, this space was shared with adultsand didn’t allow for parents to visit theirchildren immediately after surgery.

With 21 great-grandchildren, 16 girlsand five boys, Levine strongly believesin helping children at GolisanoChildren’s Hospital at Strong. “They’reour future citizens,” said Levine.

Levine’s grandson, Todd Levine,is on the Board of Directors forGolisano Children’s Hospital. “He’s

a very charitable person,” explainsLevine. Todd is clearly taking after hisgrandfather, who has contributed toother projects for the University ofRochester as well, including the Williamand Mildred Levine Pavilion.

With a lifetime of charitable givingunder his belt, Levine remains an activemember in the community. “I’m 93 nowand I’m still going to work every day,still active, and still giving,” explainedLevine.

17

Outstanding Commitment by an Individual

William Levine: Giving back to his community with spirit

Bill has always put our

community first. His

generosity … reflects a

broader understanding

of the importance of

investing in our region’s

future.” Bradford C. Berk, MD, PhD

“

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LeChase Construction: Building a path to our children’s future care

Outstanding Commitment by a Company

Improving the care of our area’s youngestpatients requires a lot of hard work onmany different levels. To provide the bestcare for our pediatric patients, who comefrom 17 counties in the Finger LakesRegion, we need up-to-date facilities tooffer advanced care. LeChase Con-struction Services has helped GolisanoChildren’s Hospital at the University ofRochester Medical Center (URMC) laythe foundation for the highest quality ofhealth care for our patients.

“LeChase Construction has been awonderful resource to our community.The company has insightful leaders,stellar services and an enthusiasticinterest in strengthening establishmentsin the Rochester-area,” said Universityof Rochester President Joel Seligman.

For the past 13 years, LeChaseConstruction’s support has helped fundimportant projects that pave the way to

better patient care at Golisano Children’sHospital. The construction company hasgenerously donated to the children’shospital at URMC through corporatesponsorships and participation at many of the hospital’s fundraising events.

In addition to building the pediatric

intensive care unit, LeChase Con-struction also helped fund the unit, whichhas dramatically improved facilities forpediatric patients in need of almost anymedical service or treatment imaginable.The company has also supported theneonatal intensive care unit, where ourtiniest patients receive care.

Over the years, LeChaseConstruction has been a corporatesponsor and eager participant in manyannual fundraising events, including the Golisano Children’s Hospital GolfClassic and the annual Gala, thehospital’s biggest annual fundraisingevents, and the Ski Invitational andRadiothon.

“I love these events because theyshow the true spirit of our community.There is such a need to protect and carefor our next generation and I appreciatebeing able to be involved first hand andto witness the generosity of all of thosewho participate in supporting theseimportant efforts,” said Wayne LeChase,chairman and managing partner atLeChase Construction Services.

The company is also very generouswith the Medical Center as a whole,having donated half-a-million dollars todate. Wayne LeChase is an exemplarydonor himself, both to the children’shospital and to the medical center.LeChase recently joined the EastmanDental Foundation Board and alsoserves on the University of Rochester’sBoard of Trustees.

“Giving back to the community isimportant – I have always felt that to bea part of something truly you need to beinvolved and committed to the cause.Building partnerships, building commu-nity and building legacy is vital tolong-term success,” said LeChase.

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Medical professionals devote their livesto helping people heal. On top of thecountless children he has treated in hisnearly 50 years of practice, Eric M.Dreyfuss, M.D., clinical assistant pro-fessor at Golisano Children’s Hospital at the University of Rochester MedicalCenter (URMC), has ensured that thenext generation of children who requireservices in his field, pediatric allergy,get the best possible quality of care.

Dreyfuss, who has worked in pedi-atric allergy since 1962, has donated $2 million to establish the FoundersFund, which will support pediatricallergy training programs and endow anew professorship for pediatric allergyat URMC’s Golisano Children’s Hospital.

Endowed professorships are givento faculty who are viewed as excep-tional in their fields and institutions. In times when the economy is falteringand its future remains uncertain, fundingthrough endowments is extremely valu-able. Through this type of donation,Dreyfuss can provide the means forinvestigating new ideas in pediatricallergy when traditional NationalInstitutes of Health resources are espe-cially tight.

As a donor to an endowed professor-ship at Golisano Children’s Hospital,Dreyfuss will be in on the ground-floor ofimportant research, teaching and clinicalcare in pediatric allergy. “Rochester hasbeen very important in establishing thefields of allergy and pediatric allergy inthe United States,” Dreyfuss emphasized.

Dreyfuss is passionate about the

significant role Rochester has had in theestablishment of the subspecialties ofallergy and pediatric allergy and wishesto sustain its remarkable reputation inthe field. Dreyfuss’s devotedness to hispractice can be well-explained by thefact that he was trained under JeromeGlaser, M.D., who initiated a pediatricallergy clinic in the 1940s.

In a piece Dreyfuss wrote titled“The Rochester, New York Tradition:Allergy and Allergists,” the pediatricallergist highlighted the many successesof allergists at URMC. In 1946, for

instance, Glaser was granted one of thefirst certificates in the new subspecialtyand became one of the initial membersof the subspecialty board of pediatricallergy for the American Board ofPediatrics. In addition, Glaser andDouglas E. Johnstone, M.D., Glaser’ssuccessor and director of the pediatricallergy clinic at URMC, were bothcharter members of the section ofallergy of the American Academy ofPediatrics. Johnstone was also past pres-ident of the International Association ofAsthmology and also of the AmericanAssociation of Certified Allergists.

“We are so very grateful to ourfriend and colleague, Dr. Eric Dreyfuss,for giving us the opportunity to establishnovel research and education programs,expand our clinical services, and lure thebest and the brightest physician-scientistsand trainees in pediatric allergy toupstate New York. We are especiallygrateful as well for the chance it affordsus to honor the outstanding founders of the field of pediatric allergy many ofwhom hailed from right here inRochester, NY,” said Schor.

In addition to funding the endow-ment for a professorship at GolisanoChildren’s Hospital, Dreyfuss has alsoestablished a donor-advised fund, acharitable giving vehicle created soDreyfuss can more easily manage hisgifts to URMC and other qualified chari-ties. It functions much like a familyfoundation at a fraction of the cost.Dreyfuss has also been very generous indonations to the Wilmot Cancer Centerat URMC.

Through his medical career and hischaritable gifts to URMC, Dreyfuss hasproven himself to be a remarkable indi-vidual, who is fully dedicated to theRochester-area community and solidlyinvested in the future of our children.To learn more about establishing anendowed professorship, please contactScott Rasmussen at (585) 273-5932 [email protected].

Pediatric allergist endows professorship

We are so very grateful to Dr. Eric Dreyfuss, for giving us

the opportunity to establish novel research and education

programs, expand our clinical services, and lure the best

and the brightest physician-scientists and trainees in

pediatric allergy to upstate New York.” Nina Schor

“

Rochester has been very

important in establishing

the fields of allergy and

pediatric allergy in the

United States.” Dreyfuss

“

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� Tim Hortons’ Week of Treats Brings Sweet Rewards

Tim Hortons’ Smile Week gave folks an opportunity to share smile cookies withtheir loved ones around Valentine’s Day with an added gift of kindness to ourregion’s children. For the past four years, Rochester-area Tim Horton’s storeshave spent a week selling Smile Cookies for $1 each to support GolisanoChildren’s Hospital at URMC. This year’s special promotion raised more than$8,400 for the children’s hospital, adding up to $28,400 in total over the years.

� IHOP Pancake Day Whips Up Fantastic Funds

The IHOP restaurants in Irondequoit and Henrietta held their 3rd annual NationalPancake Day on Tuesday, Feb. 24. All day, IHOP doled out free pancakes, askingthat customers make a donation to Golisano Children’s Hospital at URMC. Thetwo Rochester-area IHOP restaurants raised more than $1,100 this year, bringingtheir total to $5,000 in donations for the children’s hospital over the four yearsthey’ve participated in this fundraiser.

� Wal-Mart Fundraisers Work Wonders

With an annual golf tournament, employee cook-outs, red and yellow balloonsales and compassionate employees, Wal-Mart has been one of GolisanoChildren’s Hospital’s most dedicated fundraising partners. Last year alone, our12 local Wal-Mart and two local Sam’s Club stores raised more than $275,000.Wal-Mart also surpassed their $1 million gift to the Pediatric Cardiac IntensiveCare Unit that they began to collect in 2002.

This year, Wal-Mart reached yet another special occasion, and it is allthanks to one extraordinary employee. Wally Straight, a part-time greeter at theWal-Mart in Canandaigua, who has been collecting donations for GolisanoChildren’s Hospital since 2002, surpassed the $250,000 mark in fundraising.Straight started gathering donations from customers at his Wal-Mart entrancepost after losing one of his 13 grandchildren just before the child’s fifth birthday.We’d like to offer a heartfelt thank you to Wally for his remarkable efforts.

Wal-Mart and Sam’s Club will be continuing their quest to help GolisanoChildren’s Hospital during our “Miracle Month” this May. Between May 1 andJune 14, they’ll be collecting donations for the hospital, a dollar-by-dollarendeavor that proves to have extremely successful outcomes. Last year, Wal-Mart raised $64,000 during Miracle Month.

Golfing for Kids, the Wal-Mart Golf Tournament in which GolisanoChildren’s Hospital is one of the two beneficiaries, will take place Wednesday,May 20, at The Links at Ivy Ridge Golf Club in Akron, NY. For more information onthis fundraiser, please contact Betsy Findlay at (585) 273-5933.

Additional CMN Balloon Sales

Kinney Drugs (Lyons): Sunday, March 15 –- Sunday, May 24A Plus/Sunoco: Wednesday, April 1 – Monday, May 18

CMN Partners Fundraisers Flourish

�

�

�

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upcoming events

All of May, Amanda Padgham FundraisingMonth. Capture magic moments of your ownwhile making a memorable donation to ourregion’s children. During May, schedule asession with Amanda Padgham Photographyand 10 percent of the proceeds from the printsyou order will benefit Golisano Children’sHospital at the University of RochesterMedical Center. Mention this promotion andyou’ll also receive a complimentary 8x10”photo. Sessions fill up quickly, so call soon tomake a reservation at (585) 764-2341. To view Amanda’s work, visit www.amanda-padghamphotography.com.

May 23 & 24, 2nd annual Roc City Rib Fest,Ontario Beach Park. Enjoy the best assort-ment of ribs in Rochester or join in on thecompetition at this family-friendly eventduring Memorial Day weekend. This year, theevent has a new location on the beautifulshoreline of Ontario Lake. The festival is open to the public 10 a.m. – 10 p.m., Saturday, May 23, and 10 a.m. – 7 p.m., Sunday, May 24.Tickets are $5 for adults and free for childrenunder 12-years-old. For info., email [email protected] visit www.roccityribfest.com.

July 25, 20th annual Ten Ugly Men, GeneseeValley Park. Celebrate the 20th anniversary ofthis favorite summer event, hosted by thelegendary Uglies, to benefit the Bright EyesFund for pediatric brain tumor treatment atGolisano Children’s Hospital. Tickets are $30 for adults, $10 for kids between 13 and 20 years old and are free for children 12-years-old and under. To purchase ticketsor to learn more about this year’s event, visitwww.tenuglymen.com.

Oct. 11–17, 13th annual Cruise for a Cause,Norway. Take a trip on the Norwegian Pearland raise money to kids right here in theFinger Lakes region. Last year, this benefitraised more than $2,000 for GolisanoChildren’s Hospital. For more information onthis, which starts with rates as low as $579 perperson, please call 1-888-461-2628 ext. 276.

Golf EventsFor more information on the following golfevents, call Golisano Children’s Hospital’sOffice of Advancement at (585) 273-5948 or visitwww.gchas.org.

May 20, Golfing for Kids Tournament spon-sored by Wal-Mart and Sam’s Club

June 22, 21st annual Kiwanis Charity GolfTournament

June 24, 14th annual B&L Wholesale GolfTournament

July 16, 9th annual WNY Optics GolfTournament

Aug. 3, 10th annual Tim Milgate GolfTournament

Aug. 3, 7th annual Kittelberger Charity GolfTournament

Aug. 24, Ed Kaufmann Children’s HospitalClassic

Sept. 14, 13th annual Golisano Children’sHospital Classic

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� ABVI: Using all of our communityresources to help local families ABVI-Goodwill has reached out to families atGolisano Children’s Hospital at the Universityof Rochester Medical Center, along with othernonprofits and offered a valuable gift to ourmost needy families year-round— gift cardsto Goodwill.

In August 2008, ABVI-Goodwill, anonprofit organization that providesprograms, services and jobs to the blind andvisually-impaired in our community, launchedthe Good Neighbor Program. Thanks to thisprogram, 200 gift cards, or $5,000 worth ofmerchandise, have been issued to familiesserved at Golisano Children’s Hospital.

Golisano Children’s Hospital’s reachextends great distances, so some familieshave to rush here from relatively far away toget emergency care for their children. Thanksto the Good Neighbor program, socialworkers can offer ABVI’s gift cards to familieslike these, so mothers and fathers can get achange of clothes or books and toys for theirchildren. ABVI-Goodwill’s products are veryinexpensive, so families can get a lot ofimportant items with their $25 gift cards.

ABVI-Goodwill is a nonprofit that hasset out to help other nonprofits. Recognizingthe importance of using all of the community’sresources to improve the lives of families inneed, ABVI will continue to offer these much-needed gifts indefinitely as demands arise.For more information on ABVI and store loca-tions, go to www.abvi-goodwill.org.

� Panera Doubles Fundraising for Children’s Hospital Panera Bread stores have whipped up a hugesum of money to benefit kids at GolisanoChildren’s Hospital. Over the past year, theyhave doubled the money they raised in theprevious year for the hospital, raising morethan $20,000 through their Panera coffeepromotion and Operation Dough-Nationcollection boxes.

Setting up Panera’s Dough-Nationboxes in all seven Rochester-area stores wasparamount to doubling donations, since 2008marked the first full year customers coulddonate spare change at Panera Bread storesto Golisano Children’s Hospital.

Panera’s annual coffee promotion alsocontributed to Panera’s successful year offundraising. Each November and December,Panera stores sell coffee mugs, which entitlecustomers to unlimited coffee refills for theduration of the year. Panera donates a portionof these sales to Golisano Children’s Hospital.

On top of Panera’s winter promotionand donation boxes, the local stores helpGolisano Children’s Hospital by handing outthe more than 2,800 cookies during the annualfundraising event Stroll for Strong Kids.

� Sports Teams Get Extra Points for Kindness Teammate camaraderie has extended fromthe field out to kids most in need of someonefighting by their sides. For years, teams of allkinds have stepped up to hold fundraisinggames, welcome patients in as specialguests, and visit kids at Golisano Children’sHospital. From junior varsity to professional,from horse-racers to basketball players, ourarea teams have fought the good fight for kidsin our community.

We’d like to offer a spirited shout-outfor sports teams who have helped ourregion’s children over the past year: Chris

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Schiller and the Knighthawks lacrosseplayers, the Finger Lakes Racetrack jockeys,Brian Mormon and the Buffalo Bills, theNazareth Flyers and the St. John FisherCardinals basketball teams for “Battle of theBeaks,” Pittsford Mendon and PittsfordSutherland basketball teams for “RainbowClassic,” the Pittsford crew team for “Row forStrong Kids,” the Eddie Meath All-StarFootball Game players and cheerleaders and“Buckets” Blakes from the HarlemGlobetrotters.

CommunityFundraising

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• The New York Apple Association barreled$4,000 for Golisano Children’s Hospitalduring their fall apple sale at the area Wal-Mart locations.

• Cruise for a Cause amassed $2,050 forGolisano Children’s Hospital during theirOctober 2008 cruise.

• Special thanks to Ida Wheeler for holdingthe 2nd annual Holiday Showcase on Dec. 6. This all-star local youth talentshow raised a record $2,895 for ourregion’s only children’s hospital.

• Many thanks to ESL Sports Centre forcoordinating and holding the 3rd annualNutcracker on Ice to benefit GolisanoChildren’s Hospital! The great cast ofyouth performers skated to a tune of $690.

• The 8th annual Rainbow Classic provedagain that kids really do make a differ-ence! The girls and boys basketball teamsand the cheerleaders at PittsfordSutherland and Mendon raised $24,950 tocomplete their pledge to name a patientroom in the PICU in memory of their class-mates, Katelyn Pasley and Ryan McCluski.

• Jan. 31 marked the 5th annual Cycle for

Golisano Children’s Hospital

Development Office Staff

R. Scott RasmussenAssistant Vice President for AdvancementUniversity of Rochester Medical Center585-273-5932Thomas A. LaFleurDirector of Advancement585–273–5455 Karen EisenbergAssociate Director of Advancement, Community Programs and Annual Fund585–273–1462Betsy FindlayAssociate Director of Advancement, Special Events and Children’s Miracle Network585–273–5933Jennifer MontanaProgram Assistant , Special Events and Children’s Miracle Network585–273–5936Michelle FlowAssistant to Thomas A. LaFleur, Gift Processor585–276–3568

continued from page 7 Taylor Randall

Hope. This spinning fundraiser held at adozen health clubs around the Rochesterarea raised $23,241 for the children’shospital and Camp Good Days.

• The 2nd annual Battle of the Beaks,basketball games played by rivalsNazareth and St. John Fisher, raised$15,000 for Golisano Children’s Hospitaladmission tickets, raffles, t-shirt sales,concessions and a student athlete danceat Nazareth. Proud parents Becky andMike Fahy spearheaded this last year withthe help of Board Member Kim McCluski inhonor of their NICU miracle baby, Kelsey.

• The 2nd annual “Keeping Hope Strong”fundraiser event at JB Quimby’s raised$10,700 for Pediatric Surgery. The funevent was organized by grateful parentsDespina and Scott Mitchell, whose sonMason underwent numerous surgeries atGolisano Children’s Hospital. Thank you.

• Many thanks to Paul Tessoni and MarkSchwartz for organizing the infamous skiouting. The 7th annual Ski Invitational atBristol Mountain raised $48,250 forGolisano Children’s Hospital. Nearly 100

people hit the slopes on February 9th andenjoyed a beautiful sunny day, all for thekids.

• The Iron Butterfly Health Club in Victorheld their annual “Be Strong for Others”family fun night in March on Friday the13th and brought good luck to GolisanoChildren’s Hospital, raising $2,350. Thatcombined with Cycle for Hope the IronButterfly raised nearly $6,000 this year forGolisano Children’s Hospital.

• Many thanks to these and all generoussupporters and event organizers thatbenefit Golisano Children’s Hospital. Werecognize that economic times are toughand we appreciate every bit of support.Thank you.

Special thanks to these and all generousgroups that support Golisano Children’sHospital. If you are interested in hosting afundraiser please go to www.gchas.org andcomplete the Community FundraisingApplication Form or call 585-273-5948.

gave us constant encouragement,” shesaid.

Regina remembers a special occa-sion in which Taylor’s nurses made anexception when Taylor was on NPO – a Latin abbreviation for “nothing bymouth” – and had been fed through a line for 17 days. On Taylor’s birthdaythe nurses came in with a big Jello cakethat spelled out Taylor’s name.

Taylor’s doctors at the children’shospital were equally supportive inadvisory roles. When Taylor’s fourthgrade teacher was insensitive about herfrequent medical absences, whichTaylor had no control over, Reginaturned to her doctors at GolisanoChildren’s Hospital for help. Together,they decided that Taylor should behomeschooled for the year so she had more flexibility to recover.

Taylor has since switched schoolsand loves her new teacher and class-

special thanks

mates. She is even active enough tohave joined the lacrosse team, whichRegina jokes that she reluctantlyallowed after Pegoli and her doctorsencouraged the physical activity. (Likeany mother would be in Regina’s situa-tion, she was excited Taylor was eagerto get involved but a little bit nervous.)Taylor has since also gained a love ofart, singing, is dabbling in theater, andaspires to be a fashion designer or a“large vet doc,” according to her mom.

After all Taylor has been through,she’s quite a “tough kid, who doesn’t liketo complain,” said Pegoli, “When I firstmet her, she was demure, laid back, quietand withdrawn. Now, she’s become anoutgoing, interactive, normal adolescent.”Taylor’s optimistic attitude, supportivefamily, dedicated health care profes-sionals and devoted mother have helpedlead to Taylor’s miraculous and dramaticimprovement. At 12 years old, Taylorfinally gets the chance to be a kid.

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www.gchas.org

Non-ProfitUS Postage

PAIDPermit No. 780Rochester, NY

University of RochesterOffice of Development and Community Affairs300 East River RoadPO Box 278996Rochester, NY 14627–8996

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