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F E AT U R E DS T O R I E S :

G O L I S A N O C H I L D R E N’S H O S P I T A L A T S T R O N G

U n i v e r s i t y o f R o c h e s t e r M e d i c a l C e n t e r

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Spring 2008

If the African proverbis true, and it takes avillage to raise a child,then the corollary mustapply, too.

It takes a wholecommunity to make a child healthy.

The first weekend in June — orMiracle Weekend — celebrates this coop-erative, curative spirit by sharingmiraculous stories of families, medicalexperts and donors uniting to heal kids.

An infant returns home after a life-threatening head injury. A 3-week-oldbaby takes his first breath on his own.A preschooler finishes the last of three surgeries to rebuild her heart. A teenager, after a brush with bleeding to death, gussies up for her prom. A two-year-old battling a rare brain tumor hears Continued on page 9

Miracle Kids 3

Miracle Maker awards 10

Community fundraising 12

CMN partners 13

New MRI scanner 14

the magic word “remis-sion.” A one-year-old,desperate for a new liver,receives one in time forChristmas Eve.

Known as ourMiracle Kids, this issue of ournewsletter shares the heart-wrenchingstories of six fearless children, theirsupportive families and their dedicatedpediatricians, nurses and specialists.

And, of course, some of the biggestplayers in these kids’ stories — thoughoften behind the scenes — are ourfaithful donors and fundraisers. In fact,to specially celebrate such “MiracleMakers,” we’ve profiled a few in thisissue (see pages 10 and 11).

We look forward to celebrating our

Miracle Kid Hallie Engebrecht

Sat., May 31

Sun., June 1

Miracle Weekend on the way

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Dear Friends —This issue of our newsletter celebrates our miracles.

Miracles that could not have happened without all of you.

Children and families who placed their fates in our hands

and won their battles.

to stop cigarette smoking in homesaround the state and country. We aredeveloping novel ways to perform bonemarrow transplants in children withcancer, to diagnose, follow, and treatcomplex genetic diseases that destroychildren’s nervous systems, and tocombat infections that occur in childrenwith abnormal immune systems.

As Senator Clinton once wrote,and as all of you know, “It takes avillage…” None of us could walk thiswalk alone. Each and every one of youown a piece of our success. And I knowthat each and every one of you willcontinue to partner with us as we ensurethat all of our children receive the verybest care available, not just today, butin the future, too.

Yours truly,

Nina F. Schor, M.D., Ph.D.Pediatrician-in-chief

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. ErdleTimothy FournierRoger B. Friedlander Jay W. GelbMike GoonanDeborah Haen*Michael HaymesArnold KlinskyTodd LevineScott MarshallGary MauroKim McCluskiBrian PasleyJames 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

* Executive Committee

Corporations and individuals who spontaneously made an investment inthis community and the welfare of itsyoungest members without certainty ofdirect return on their dollar. Healthcareworkers who dedicate their lives toensuring that “medicine of the highestorder” makes it all the way down theroad to our smallest and youngest treas-ures. These are truly miracles worthy of celebration.

But for every miracle, there is a mile more we have to go. For everygood” in our portfolio, there is a great” yet to be attained. We owe ourchildren and their families nothing less.We cannot rest while 15 percent of children in Monroe County are obese.We cannot rest while the most severeasthma exacerbations requiring hospi-talization occur in children under 24 months of age who live in inner citieslike Rochester. And so we at GolisanoChildren’s Hospital at Strong are part-nering with community organizations tolaunch an obesity prevention and treat-ment initiative. We are working withregional and national organizations

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Anders Swanson with his family.

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MIRACLE KIDS

A year ago in January, 18-month-oldAnders Swanson was running up anddown Florida shores with his parents,Amy and Garth. It would be the lastfamily vacation before his little brother,Beckett, would be born in mid-spring.

After returning home to Batavia,Amy became aware that something waswrong with young Anders. What hadseemed like airsickness — he wasvomiting on the plane — didn’t ease upwhen they touched down. And as themonth drew on, Anders began shakingand stumbling.

On a Saturday in February, on ahunch, Amy drove Anders to the chil-dren’s hospital, where doctors ran abattery of tests and came back to Amywith news she never expected: There wasa mass in his brain, and they were admit-ting him immediately.

Later that night, Anders startedanti-seizure medications and steroids tohelp relieve the hydrocephalus, or excessfluid that was putting pressure on hisbrain. After a biopsy and spinal tap, theSwansons sat down with David Korones,M.D., and Howard Silberstein, M.D. —pediatric oncologist and pediatricneurosurgeon at Golisano Children’sHospital, respectively — for the first of many heart-to-hearts.

Anders had a rare, aggressive braintumor near the center of his brain,Korones told the Swansons. Calledpineoblastoma, the mass was the size of a large gumball.

“They were very honest with us,”Garth said. “Most childhood cancers arecurable, but this one would be an uphillbattle.”

Korones began poring over researchpublications and tapping colleaguesnationwide to synthesize a treatmentplan just for Anders: first, a few roundsof intensive chemotherapy to tackle thecancer cells in his brain and spinal fluid;then, radiation to shrink the tumor itselfand surgery to remove it; and finally,two more sessions of strong chemo-

Anders Swanson:Youngster fights brain tumor with zest, grace

therapy, this time, paired with a tech-nique called “stem cell rescue” (Anders’own blood stem cells, harvested at thebeginning of treatment, wouldstrengthen him later on).

A week after his biopsy, Anderswas discharged home to rest up, but hewas only home a day before fever struck— rotavirus, a staph infection and thrushbrought a triple-threat, landing him backin the hospital for a six-week stay,during which he began treatment.

“It was really rocky. He’s a power-house of a kid, but suddenly he was

only wanting to be held, too sick to eveneat. He fell from 27 pounds to 20; atpoints he was even fed intravenously,”Amy remembered.

Thankfully, the second and thirdrounds of chemotherapy went moresmoothly. Soon, it came time for conformal radiation.” This high-techprocedure uses computer simulation to construct an image of a tumor, thenshapes beams to the exact contours of the treatment area, sparing healthytissue and minimizing risk for long-termcognitive effects.

Soon the tumor had shrunk enoughso that, now four months along in histreatment plan, surgery had becomefeasible. Again, Anders came throughwith strength, and Silberstein was able toexcavate at least 90 percent of the tumor.

Days later, Amy delivered Beckett.Anders’ doctors came down to congratu-late the Swansons on their second baby,Continued on page 9

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Hallie Engebrecht

Engebrecht said. “But in the middle ofJuly, she turned yellow again.”

A couple of weeks later, Halliereturned to the hospital with high feverand her stomach abnormally protrudedwith fluids from her failing liver.

On August 2, her name went on the top of the liver transplant list.

“Nationally, there are only 400to 500 kids on that list. It isn’t thatcommon for pediatric patients to haveliver problems, so when they do, theyare given priority,” said AdelBozorgzadeh, M.D., director of trans-plant services at Strong MemorialHospital and Hallie’s transplant surgeon.

Jeff and Jodi had their liversscreened as possible matches for theirdaughter, but both were too large totransplant into little Hallie’s body. Their19-year-old son Kyle had a successfulscreening, but due to the intensity of the surgery and recovery, Bozorgzadehsuggested Kyle only be a last resort.

While the family waited for analternative liver, they controlled Hallie’sdigestive troubles with medications. Shewas uncomfortable, but her liver func-

Victor residents Jodi and Jeff Engebrechtknew their daughter, Hallie, was smallfor her age — at 2 months old, she onlyplaced in the 25th percentile on theweight charts. Up to that point, Hallie’spediatrician had thought the problem —failure to thrive — likely stemmed fromnursing complications.

However, the Engebrechts soonlearned something more was at work.

“At her 2-month checkup, Hallie’sdoctor saw her eyes were turningyellow,” Engebrecht said.

Alarmed, Jeffrey Eisenberg, M.D.,of Fairport Pediatrics, ordered tests andblood work to be done; the resultspointed to Hallie suffering from biliaryatresia, a condition in which her liverheld onto bile rather than drained it.Without the help of the bile, her smallintestine could not digest fat the way itshould and, if untreated, might lead toliver damage and cirrhosis.

Hallie was immediately admittedinto Golisano Children’s Hospital,where she underwent a surgery calledthe Kasai procedure to create artificialbile (drainage) ducts from her liver toher intestine. Surgeons also removed hergall bladder and appendix and fixed amalrotation of her intestine (if a normalintestine made an ‘S’ shape, Hallie’smade a backwards ‘S’).

But Hallie wasn’t out of the woods:six days later, she suffered a bowelobstruction, needing more surgery.

“The recovery after the secondsurgery was the hardest for all of us,”Engebrecht said. “She had acute prob-lems with her blood pressure afterward,and she recovered so much slower thanshe had the first time. Still, the intensivecare team answered all our questions,assuring us they had a plan for her.”

Hallie left the hospital May 7,knowing that the Kasai procedure wouldonly buy time — no one could tell howlong it might help.

“She was home, gaining weight,for about two and a half months,”

tioned enough to keep her going.“She was on a lot of Motrin,”

Engebrecht said. “And we always knewwhen she was due for another dose. She wasn’t eating well and she wasn’tgaining weight because her liver wasgetting big and hard, which made it hardfor her to fill her stomach up.”

Finally, relief for baby Hallie came.On December 2 — exactly four monthsafter she went on the donor list — shehad a liver transplant.

“On the night I found out there wasa liver available, I flew on a small plane,in a snow storm, to New York City, toretrieve it,” Bozorgzadeh said. “I cameback to operate immediately. It wastiring, a real marathon session, but I’ddo it 100 times every day, if I could.”

On Christmas Eve, Hallie returnedhome.

“She’s our family’s Christmasmiracle,” Engebrecht said.

She and her husband speak highlyof the team of doctors and nurses atGolisano Children’s Hospital.

“I just can’t express how terrificthey are,” she said. “Everyone was so warm and caring, they really lovedHallie. The nurses gave her Christmasgifts, and even I got lots of hugs. AndDr. Bozorgzadeh — he’s my hero.”

The admiration is mutual;Bozorgzadeh keeps pictures of Hallie on his cell phone.

“This is one of the joys of comingto work,” he said. “I run into angels likeHallie, I meet such committed familieslike hers.”

Today, Hallie is thriving. Thanks to a physical therapist, she is learning to crawl. She returns to the hospitalevery week for blood work, and to seeBozorgzadeh twice a month.

“She knows everyone. The nursescome over to say hi to her, and she’s allsmiles,” Engebrect said.

That kind of courage is remarkable.As Bozorgzadeh put it best, “Hallie isthe essence of what miracles are about.”

Hallie Engebrecht:Baby receives liver in the nick of time

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MIRACLE KIDS

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MIRACLE KIDS

Jack Albanese

One chilly weekday morning lastDecember, Rochesterians Christyn andJeff Albanese were juggling gettingthemselves ready for work with keepingan eye on their bubbly 7-month-old, Jack.

Christyn had set Jack down on herbed, boosted by a Boppy pillow andoutfitted with a couple favorite toys.Turning around for brief moment tothread cuff links through her blouse,she heard a thud.

“That noise has replayed a milliontimes in my mind,” she said.

Jack was laying face-down on thefloor, crying. She scooped him up, andhe began nuzzling into her arms, whim-pering; only his cry wasn’t fierceenough.

“It wasn’t the howl you’d expect,”she said.

In no time, the couple brought Jackto see Laura Price, M.D., a pediatricianat Pathway Pediatrics, in Rochester, anda former chief resident at GolisanoChildren’s Hospital. Price had treatedJack for an ear infection just the weekbefore, and was shocked to see thelively boy now behaving like a rag doll.

Price told the couple that she would

phone ahead while they took him straightto the children’s hospital; within 15minutes, Jack was having his first CTscan. Though it showed a small bleed,his actions hinted more was at stake —he couldn’t hold his head up, and hewasn’t getting enough oxygen.

“Doctors inserted a breathing tube,and panic hit us,” Albanese said.

Thankfully, successive tests soonshed more light on Jack’s condition —a dye used in the scan was seeping outof the blood vessels, suggesting that thevertebral artery, near the base of thebrain, had torn.

Lucky for Jack, that particularartery has a “spare” of sorts. If part isdamaged, the blood can be reroutedthrough a new course, posing little to no trouble later in life.

But two hurdles needed to becleared first — and fast. Jack needed a tube to help drain excess fluid away,so pressure didn’t mount inside hisskull. And, to help clot the bleeding,interventional radiologists would haveto thread a catheter through his artery —sacrificing part of it, and directing bloodalong the “spare” route instead.

“With a baby like Jack, this is all a delicate balancing act,” said JonathanMink, M.D., chief of Child Neurology at Strong and one of Jack’s specialists.

Thankfully, both interventionsworked; the bleeding stopped later thatnight, and the inner-skull pressureeased. But more obstacles loomed —especially the risk of vessel spasms,in which blood that leaks outside thearteries can irritate vessels and poten-tially trigger stroke. After a shorthoneymoon period, these spasms couldonset within four to 14 days.

“We watched Jack like a hawk,”Albanese said.

On his fifth day, a grand malseizure shook him for eight minutes.

“I remember the hopelessnessof waiting that out,” she said. “Everytime we were warned that Jack ‘wasn’tout of the woods’ was a kick in thestomach. But we needed this honesty.”

After beginning medicines to helpward off the vessel spasms and seizures,another question rose: whether or notJack could live without a permanentshunt.

“Sometimes, after injury, childrenare able to begin absorbing and drainingtheir own brain-spinal fluids — andsometimes, we have to implant a shuntto help,” Mink said.

After a few days of careful moni-toring, doctors realized Jack’s case wasone of the latter; they installed a valveinside that helps him send fluids to otherparts of his body.

Meanwhile, Christyn’s mom had

Jack Albanese: Infant healsafter life-threatening fall

Continued on page 9

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Five years ago in May, Brenda andKevin Wyand of Bloomfield gave birthto their second baby girl.

“I kept repeating, ‘Is she perfect?’over and over,” Brenda remembered. I was hoping for 10 fingers, 10 toes.Never did I imagine that she could nothave a perfect heart.”

But that’s exactly what the Wyandssoon learned. Only moments later,a nurse at FF Thompson Hospital inCanandaigua noticed that newbornFahris was slightly blue — a clue thather heart was not delivering the oxygenher body needed.

In a whirlwind, Fahris was trans-ported to Golisano Children’s Hospital,where she was diagnosed with constel-lation of heart defects — hypoplasticright ventricle (an underdeveloped rightside of the heart, resulting in inadequateblood to the lungs, and thus in Fahris’blue coloring), hypoplastic pulmonaryarteries (underdeveloped heart arteriesthat bring blood to the lungs), and totalanomolous pulmonary venous return(oxygenated blood is returned to thewrong side of the heart, overworkingthe heart and depriving the rest of thebody of oxygen).

“Essentially, she had only half afunctioning heart,” said George Alfieris,M.D., director of Pediatric CardiacSurgery at Golisano Children’s Hospitalat Strong, and one of New York’sbusiest pediatric heart surgeons. “Thestress on her heart was incompatiblewith life, so our first goal was to ease itand stablize her. Then she could gohome, grow and prepare for two moremajor heart surgeries she’d undergobefore the age of 5.”

Alfieris performed the initial phaseof a three-step surgery when Fahris was only 2 weeks old, creating largerpulmonary arteries, reconnecting herpulmonary veins and providing adequateblood to her lungs through an artificialtube. For four weeks, the Wyands madethe 40-minute trip to the hospital daily.

“There were stretches when Fahriswas probably the sickest child here,”Alfieris said. “But her family was vigi-lant, supporting her at every turn.”

When Fahris was 4 months old sheunderwent the second stage of her open-heart surgeries. Alfieris completed aBidirectional Glenn”— a procedure that allows the blood from the head and upper limbs to flow directly to thelungs, bypassing the underdevelopedright ventricle altogether and greatlyrelieving the strain on the half a heartshe had.

Fahris spent two weeks recoveringand for the next few years, periodic visitsto cardiologists kept her healthy. LastSeptember, when she was a little overfour years old, she was stronger— andher veins were large enough — for herfinal surgery, the “Fontan.” Alfierisconnected the large blood vessels (whichare normally attached to the heart)directly to the lungs.

Fahris spent three weeks in thepediatric ICU, battling pneumonia andhealing her rebuilt heart. She spentweeks on a ventilator, and at one point,needed surgery to remove scar tissuethat had formed in her lungs and waspocketing fluid, making it even harderfor her to breathe.

“I turned to Fahris and asked her,How do you stay so brave and strong?’”Wyand said. “And she said ‘Mommy,I just take a deep breath in.’ Her wisdomstunned me. How could someone sosmall be so bold?”

In mid-November, after 79 days inthe hospital, Fahris was discharged witha chest tube to collect fluids drainingfrom her lungs, a specially insertedhome IV (PICC line) and oxygen.

Fahris Wyand:Five-year-old proves she has courage, heart

Dr. George Alfieris with his miraclepatient Fahris Wyand.

MIRACLE KIDS

Continued on page 9

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MIRACLE KIDS

Two years ago, in May, Fairport teenMichelle Plotzker noticed somebleeding in her stool.

It was an off-putting surprise, butMichelle had a good idea of what mightbe to blame — a rare inflammatorybowel disease called ulcerative colitis,that, in part genetic, had already needledits way into her family tree.

Later that summer, tests confirmedthat 16-year-old Michelle indeed hadthis type of colitis, which causes opensores in her large intestine and colon,making certain foods extremely painfulto digest.

“With the worst flare ups, I wouldonly be able to stomach Rice Krispiesand chicken soup,” Michelle said.

Since ulcerative colitis — much likeits cousin sickness, Crohn’s disease —brings a rollercoaster of periodic flareup and remission, Plotzker and herparents, John and Cindy, hoped that a medication might help manage it.Michelle tried that route for a while,playing varsity volleyball and beginninga course of oral steroids diagnosed by her pediatric gastroenterologist atStrong, Thomas Rossi, M.D.

“For a stretch, that was enough,”Michelle said.

But by the first of November,the steroids weren’t enough anymore;Michelle became unusually sick and soseverely dehydrated, she was admittedto Golisano Children’s Hospital. There,specialists tried a steroid enema, hopingthat it would be more effective than theoral medications and bring the diseaseback under control.

But that didn’t work, either. Nor didRemicade, an advanced infusion treat-ment hailed for stalling the disease andreducing pain. By then, Michelle had lost25 pounds and was suffering intractablebleeding that, without intervention, couldultimately lead to death.

Transfusions sustained Michelle for some time, but they weren’t apermanent solution. So, after much

counsel and 34 days of test-drivingtreatments, Michelle decided to forgo a chemotherapy drug (her last non-inva-sive resort) and get straight on withsurgery to remove her colon.

“I wanted to be better,” she said. I had missed my Thanksgiving dinnerand my grandmother’s peanut butterchocolate pie.”

Decided on this course, WalterPegoli, Jr., M.D., pediatric Surgeon-in-chief at Golisano Children’s Hospital at Strong, met with Michelle and herfamily to explain what would happen.First, he would remove Michelle’scolon, and temporarily bring her smallintestine through her abdominal wallwhile she healed. Then, two follow-upsurgeries the following summer, wouldreconnect her intestine to her anus.

“A nurse told me to bring in myfavorite pair of jeans, and we’d decidewhere we wanted this all to happen,”Michelle said. “And after a make-believe run through on a pillow, I was as ready as I could be.”

Michelle’s surgery on Dec. 4 wentsmoothly. Soon after, she was feelingbetter, though sore.

Four days later, she was home,

celebrating a make-up Thanksgiving andfinally able to relish bits of everythingfor the first time in months. ComeJanuary, she was back to school andgetting on with traditional teenagefare — prom, dizzying college decisions,and her spring sport, softball.

Finally, last summer, after Michellesailed through her two follow-upsurgeries, she was declared cured.

“As an adolescent, Michelle’s matu-rity and grace is beyond her years. Tocome through such a stressful period ofher life with such humor, such spirit —that makes her a miracle,” Pegoli said.

Michelle, always on the move, liveslife full-tilt — she’s an Explorer programvolunteer at the fire department, holdsdown a part-time job and plays twosports each year. She enjoys science,and is considering a career in veterinarymedicine or zoology.

She’s also found a way to thank the hospital that helped heal her;unashamed of her scars, she coachesother kids through similar procedures.

“I tell them it’s going to be okay. If I can make them just a fraction lessscared, I’ve done something,” she said.

Michelle Plotzker: Girl proves she’s “got guts”

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In December 2006, Webster residentsDespina and Scott Mitchell set off to a prenatal appointment, excited to learn if they were having a boy or a girl.

But the mid-point ultrasoundshowed something they didn’t expect—a black mass on the screen hinted thattheir baby son would be born with acongenital diaphragmatic hernia, orCDH. Only 1 in 3,000 newborns are bornwith this defect, which has a forbiddingsurvival rate of only 50 percent.

Thomas McNanley, M.D., an asso-ciate professor of Obstetrics andGynecology at the University ofRochester Medical Center, who special-izes in obstetric testing at the University’saffiliate, Highland Hospital, explained tothe couple that their son, Mason, wouldbe born with a hole is his diaphragm —the sheet of muscle just below the lungs.To live, Mason would need surgery soonafter being born.

“That hole had allowed Mason’sorgans to drift up into his chest,squeezing on his lungs and keeping themfrom growing,” Despina Mitchell said.

After testing to make sure nothingelse was awry, McNanley sent theMitchells to meet Timothy Stevens,M.D., M.P.H., a neonatologist who directsthe Neonatal Intensive Care Unit atGolisano Children’s Hospital at Strong.

“Dr. Stevens toured us through theNICU, comforting us, but not sugar

coating anything,” Mitchell said.The couple braced themselves for

the very real chance that, even withevery medical intervention available,Mason might not survive.

“We waited to paint the nursery,”Mitchell said.

Three days after he was born,Mason was put on ECMO, a heart-lungmachine that helped deliver the oxygenhis body needed. Nine days later, heunderwent surgery to place his liver,stomach, spleen and intestines backwhere they belonged.

It seemed to be a success, and twodays later, he was taken off ECMO.

But for two weeks, Mason stillstruggled to wean off intensivebreathing support. It wasn’t until June 2— the day of the hospital’s annualChildren’s Miracle Network telethon —that he achieved freedom.

“They announced during the broad-cast, that ‘Mason Mitchell is finally, forthe first time in his life, breathing on hisown,’” Mitchell said.

Mason continued to improve. He practiced feeding, phased off painrelievers and on July 3, he headed homefrom his 56-day stay.

But a few months later, Masonbegan vomitting and Mitchell’s mommy-radar sensed something was wrong.

The couple brought Mason back in,learning that his scar tissue had caused

a bowel obstruction — a slight risk fromthe initial surgery. Mason underwent hissecond operation, spending another two weeks in the hospital, struggling to regain weight he’d lost.

In December, after he’d been homeagain for little more than a month,Mason coughed in a way that againpiqued Despina’s concern.

She was right. An X-ray showedthat something extremely rare hadhappened: Mason’s diaphragm patch,along with the patch in his abdomenthat held his organs in place, had bothdissolved, causing him to re-herniate.Now an expert in hospitalization andhealing, Mason would spend just fivedays recovering after a double-dutysurgery to mend both tears.

A little more than a week beforeChristmas, Mason headed home, whole.Thankfully, he has been healthy since.

“Holding him in our arms was thebest gift imaginable,” Mitchell said.

The Mitchells, eager to make theNICU a more welcoming place for otherparents, have raised $8,300 toward reno-vating the unit’s parent waiting room.

Despina has also plugged into anonline support group for parents of chil-dren with CDH, called Breath of Hope,Inc. Her dream is to develop a networkof her own, providing access to experts,information on the best therapies andthe latest research.

Mason Mitchell: Baby diagnosed in-utero beats odds and won’t stop smiling

MIRACLE KIDS

Mason Mitchell withhis dad, Scott Mitchell.

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Continued from coverjoint successes with them, with you, andwith the so many other groups who havebeen instrumental in transforming thishospital into a place where miracles canhappen daily.

We hope many of you will join usto commemorate the strides we’ve madetogether by marking your calendars forthe Miracle Weekend festivities men-tioned at right. Again, thank you for allyou do to support the children whosejourneys fill these pages — and the somany others whose stories are too manyto tell.

25th Children’s Miracle Network

Telethon on News 10NBC

presented by Perkins Restaurants

We’re proud to present our annual CMNtelethon, which broadcasts live fromthe Strong Memorial Hospital lobby,10 a.m. to 1 p.m., and 7 to 11 p.m.,Sunday, June 1.

The telethon is a platform forchildren and their families — our sixMiracle Kids, of course, but plenty ofothers, too — to share their stories oftrials turned triumph at GolisanoChildren’s Hospital at Strong.

To make a pledge during the event,please dial (585) 241-KIDS, or log on towww.gchas.org and make a gift elec-tronically.

Just before Christmas, she spentthree days in the hospital battling aninfection in her PICC line — both thatline and her chest tube were soonremoved. After that, she began returningweekly or bi-weekly to have fluidremoved from her lungs.

“Her heart is growing stronger, butthis marathon of surgeries was draining.We still rely on other’s people’s strength— our friends, our nurses, our doctors,”Wyand said. “Everyone at the hospital— even the housekeepers — is rootingfor her.”

Today, Fahris has good days andhard days. On the good ones, shecatches frogs in the creek behind herhouse with her older sister, Morgan,or pieces together puzzles, or colors.

“She’s outgoing and likes toexplore,” Wyand said. “She’s so joyful.In spite of everything, she soldiers on,knowing nothing different. She’s quitematter-of-fact about all of this, telling us it is worth it — ‘It’s going to help my heart boo-boo,’ she reminds us.”

Alfieris is also optimistic that betterdays await Fahris. “We’re hopeful thatsoon, she’ll be able to live an activechildhood and a full life,” he said.

friends spreading the word; prayerchains were taking root internationally,and they seemed to be helping.

“Jack was babbling, and hisstrength was returning,” Albanese said

Three days after shunt surgery,Jack was cleared to go home. Thefamily packed piles of get-well cards,a zoo’s-worth of stuffed animals, andeven a miniature Christmas tree fromJeff’s parents (both sets of grandparentshad come bearing gifts and food, deter-mined to not let Jack’s first holiday getlost in the shuffle).

“What a joy it was to send himhome after a potentially life-threateninginjury, knowing that everyone elsewould see him as just another healthybaby,” Mink said. “We’ll follow up withhim, but we have good reason to believehe’ll go on to live a full, regular life.”

Just weeks later, Jack was back tobeing an 8-month-old wiggle-worm —grabbing at things, eating voraciously,acting so curious, so alert, that it wasalmost as if he were trying to make upfor the month he had missed.

His parents are overjoyed to seetheir little boy back to his old, nosy self.

Fahris WyandJack AlbaneseAnders Swanson

Continued from page 6Continued from page 5Continued from page 3and a few days later, the whole familywas discharged together.

Anders’ treatment continuedsmoothly, finishing with final rounds ofthe chemotherapy, now with the “stemcell rescue” to give him extra vigor.

Finally, in mid-September last year—after a seven month whirlwind ofevery cancer-blasting weapon imagi-nable—Anders was declared cancer-free. He is still being monitored on afairly regular basis, but he continues to enjoy waking up in the wee morninghours to eat “beegles and wiffles” forbreakfast. Every morning he looksforward to sending cell-phone videosback and forth to his Grandma andUmpa (Grandpa) in Florida.

In addition to his team at Strong,Anders is also receiving great care fromhis Rochester-based pediatrician, MollyHughes, M.D., who works at WestsidePediatrics in Gates. Hughes has takenon an incredible advocacy role forAnders and his special health needs.

“Anders is a miracle—he’s the kindof kid that screams almost everything he says, just bursting with joy,” Koronessaid. “But I suppose it is in part genetic,because his parents are just as special.”

Miracle Weekend12th annual Stroll for Strong Kids

presented by JPMorgan Chase

Our annual Stroll for Strong Kids isguaranteed fun — rain or shine!

The morning kicks off at 9 a.m.Saturday, May 31, and superchargesyour weekend with family fun,including clowns, inflatable play sets,kids crafts and costumed characters.

Later on, a walk through GeneseeValley Park ends with free Subwaysandwiches and dance-worthy tunesfrom Gary the Happy Pirate.

To learn how you or a team offriends can sign up — or how you canmake an online donation in support ofyour favorite Stroll team — visitwww.gchas.org or call (585) 273-5948.

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The annual Gala hosted by GolisanoChildren’s Hospital at Strong requires carefulplanning and an extensive network of friendsin order to make it as smooth-running aspossible. An important part of the behind-the-scenes work is sending out invitations,and thanks to Hammer Packaging Corp-oration, the children’s hospital has one lessthing to worry about: For the last 10 years,the family-owned company has donated theGala invitations to Golisano Children’sHospital, as well as “save-the-date” cardsand other printed materials for the event.

“We donate those things to supportwhat I consider to be a very importantelement in the care of children in our area,”said Jim Hammer, president and chief execu-tive officer of Hammer Packaging.

The nationally-known, highly-respected

vated Pediatric Treatment Center, where kidscome to receive chemotherapy, blood trans-fusions, and many other invasive treatmentprocedures.

“I view children as our future, and thechildren’s hospital is something that thiscommunity should be very proud of,” he said.It’s rewarding to be able to have some of thebest care in the country right here in ourbackyard.”

Miracle Maker Awards Each year, countless individuals, businesses and organizations champion theneeds of Golisano Children’s Hospital at Strong. In an effort to spotlight someof our most devoted supporters, we have a tradition of choosing “MiracleMakers” who have made creative and passionate strides for children here.

packaging printing company has beennamed a Best Workplace in America byMaster Printers of America for the past fiveyears because Hammer’s culture is deeplyrooted in the fact that “the right people areour most important asset.”

People clearly are an important asset to Hammer outside of his work, as well —he is a contributor to many major charityprograms throughout Rochester. He supportsGolisano Children’s Hospital’s annual Galaand golf tournament. His wife, Donna, anddaughter-in-law, Selma, serve on the plan-ning committee for the Gala, and his sonJason helps to plan the golf tournament,which he attends. Hammer also has twodaughters, Lisa and Ashley.

“Children are our future, and I knowhow important it is to have a talented, reli-

Hammer Packaging Corporation: Helping Spread the Word

Outstanding Commitment by a Corporation

Philip C. Gelsomino, II: Putting the ‘Perk’ in ‘Perkins’

Outstanding Commitment by an Individual

No matter where Philip Gelsomino’s daytakes him, he keeps a smile on his face.

A self-proclaimed “people person,”Gelsomino has been a vital part of the chil-dren’s hospital family with his support of theannual Gala and golf tournament, as well aswith his purchasing much-needed items fromthe children’s hospital’s Wish List, whichprovides comfort items and medical equip-ment to patients. He has also purchased twokite sculptures and a bed space for the chil-dren’s hospital’s Pediatric Surgical Suite.

Although he has two children now —daughter Sophia, 9, and son Vincenzo, 2— Gelsomino said his interest in GolisanoChildren’s Hospital began before he becamea father. His interest was strengthened lateron, when his family found themselves inneed of exceptional health care andGolisano Children’s Hospital came through.

“The more I found out about the careprovided at the children’s hospital, the more Iwanted to help,” he said.

When he is not busy giving back to hiscommunity, Gelsomino enjoys travelinganywhere, whether it’s to Phoenix, California,Aruba, Florida or even Buffalo,” andspending time with his two children and hiswife, Beverly.

“Anywhere is new and exciting for mebecause every day is a new day,” he said.

His positive attitude extends into hisworkplace, as well. As chief executiveofficer of The Restaurant Group, LLC,Gelsomino oversees the construction anddaily operations of western New YorkPerkins franchises; this year, Perkins is thepresenting sponsor for the 10NBC telethon.Gelsomino’s latest contribution is naming a procedure room in the soon-to-be-reno-

able facility like Golisano Children’sHospital,” Hammer said. “We need tosupport and capitalize on this valuable andtruly important facility.”

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Kiwanis: Sharing Talents for 25 Years

Outstanding Commitment

by a CMN Sponsor

Ten Ugly Men:

Providing Beautiful Opportunities

Outstanding Commitment by

a Community Group

It’s been said that when one door closes,another opens; in the case of Ten Ugly Men,it has never been truer. When veteran “Ugly”John Fitzsimmons’ first wife passed awayfrom a brain tumor in 2003, the group begandonating money to the Bright Eyes Fund, set up for pediatric brain tumor treatment at Golisano Children’s Hospital at Strong. To date, the men have raised more than$100,000 for the fund.

“Before, we only gave to one primarycharity,” Fitzsimmons said. “When my firstwife passed away, we made the Bright EyesFund a co-beneficiary.”

Ten Ugly Men formed in 1989, when agroup of Nazareth alumni threw a party forfriends and family. Surprised by the turnout,they decided to move the get-together to apark the next year, charge a couple of dollarsfor refreshments and donate the proceeds toa charity.

“The concept grew exponentially; by itsthird or fourth year, there were a few hundredpeople attending,” Fitzsimmons said.

This year, the group will celebrate its19th festival with a toga theme. The games,food, beverage, live music and entertainmentfor guests of all ages— including sports tour-naments in kickball, volleyball, bocce and a5K run — make the all-day picnic in the parkseem more like an over-the-top block party.

“We start planning in February orMarch,” Fitzsimmons said. “We start gettingtogether and seriously making plans inApril.”

Although the group now has 11members who are not all Nazareth Collegealumni, their generous spirit and fun-loving

habits are the common bonds of their friend-ship. The self-proclaimed “Uglies” areoriginal members Michael Hartman andMark Palvino, as well as Fitzsimmons,Michael Perrotta, Alan Wood, Larry Casey,Brad Quigley, Mike Geisler, DwightBarksdale, Alan Lagonegro and KerryGotham.

This year’s festival is set for 11 a.m. to 8 p.m. Saturday, July 26, at Genesee ValleyPark. For more information, to purchase aticket or to donate, visit the Ten Ugly MenWeb site at www.tenuglymen.com.

In the spirit of honoring the generosity of twolocal volunteer legends, Rochester’s KiwanisClubs are marking their silver anniversary of supporting Golisano Children’s Hospital.

Twenty-five years ago, Jack Harden and Bob Calabrese had a vision of extendingtheir volunteer program to help childrenthrough the Children’s Miracle Network, a non-profit organization that provides a wayfor businesses, customers and communitygroups to rally behind more than 170 chil-dren’s hospitals across North America.

As members of Kiwanis International—whose name literally means “we share ourtalents” — it made sense to Harden andCalabrese that Kiwanis groups join thenetwork. Today, their dream has taken firmroot. In the last five years, the Genesee andFinger Lakes divisions of Kiwanis have raised

more than $100,000 for Golisano Children’sHospital. Their fundraisers include golf tour-naments, auctions, raffles and their “QuarterMile of Quarters” event that took placeMarch 8 at Eastview Mall.

“We reached our goal of $4,000 —which equals 16,000 quarters and extendsone-quarter of a mile if you line them up,”said John Hanratty, Finger Lakes KiwanisClub coordinator for CMN programs.

In the future, Hanratty said the two divi-sions hope to coordinate more activitiestogether in order to bring in more money.

Kiwanis have also donated activitybags, books, baby beanies and pizza partiesfor Golisano Children’s Hospital.

“We believe that the future rests withthe children. Among the most in need arechildren who are ill,” Hanratty said. “Kiwanisis there to help in any way we can.”

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More than 335 guests — including more than 40 members of the NICU staff — braved snow and ice to help celebrate the 6th annual Taylor Brush Dinner Dance, held Saturdayevening, March 8, at the River’s Edge Restaurant & PartyHouse.

The night brought dinner, DJ tunes, dancing and raffles(a Tahitian peal and diamond necklace and an autographedBuffalo Bills football were up for grabs), garnering more than$9,000 to benefit the NICU at Golisano Children’s Hospital atStrong in loving honor of Taylor Brush.

This year’s dinner dance pushed “Team Taylor’s” totalfundraising efforts — a combination of dinner dance proceeds,Stroll for Strong Kids pledges and various other endeavorsheld throughout the year — past the $100,000 mark.

And it’s clear that charity runs deep in the family—Justin Stundtner, one of Jen and Tim Brush’s nephews, won$450 from the night’s 50-50 raffle; immediately, he decided todonate the funds back to the hospital.

Stacey Vaccaro, PamBrunelle, Carrie Moriartyand Jen Brush rememberTaylor in a way that helpsfuture NICU patients.

Dinner dance fundraiser pushes Team Taylor past $100,000 mark

Thousands of pennies: a lesson in

math, caring Ms. Christina Hartford’s thirdgrade class at Village Elementary School, inHilton, learned a lot more than how to workwith numbers in thousands —they learnedhow their generosity can help kids atGolisano Children’s Hospital.

Their class coin collection set out tocollect 1,000 pennies and dimes. But, by

CommunityFundraisingRound-up

Knighthawks brighten hospital stay

for young fans Rochester KnighthawkChris Schiller makes big plays both on andoff the field for patients at GolisanoChildren’s Hospital. Every home game thelacrosse team plays, Schiller gives his boxseats to a young sports fan who is receivingcare at the hospital. After the games, hetakes the time to meet the patients and theirfamilies, give gifts, sign autographs andintroduce them to his teammates.

“It’s rough to see what these kids gothrough, but it makes me appreciate what I have even more,” he said.

Junior Girl Scout troop helps make

NICU cozier In March, Troop 129 madeblankets for the NICU at Golisano Children’sHospital at Strong. The blankets are darkcolored on one side — so as to simulate thedarkness of a mother’s womb for the prema-ture babies — and cheery on the other, tohelp parents identify their baby’s area in thebusy unit.

pouring their heart into the project, theseambitious students stunned their teacher,meeting the goal six times over by gatheringmore that 6,000 coins—$122.

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NIX 100.5 RADIOTHON

IHOP Pancake Day

Kudos to the short-stack scarfing public — specifically those who ventured out to Rochester’s two local IHOP restaurants on Feb. 12, our 2nd NationalPancake Day Celebration. The day-long hotcake fundraiser served uphundreds of free pancakes, putting customers in a giving mood. The day raisedmore than $1,400 in donations to Golisano Children’s Hospital at Strong.

Tim Hortons’ “Chocolaty Charity”Wildly Successful

Heartfelt thanks to hungry area cookie-monsters who purchased chocolatechip Smile Cookies during Tim Hortons’ week-long fundraising effort (Jan. 29 to Feb. 6). Thanks to your sugar cravings, our 27 area stores were able to raisemore than $10,000 for Golisano Children’s Hospital at Strong.

This brings Tim Hortons’ three-year fundraising total to an impressive$21,000.

Wal-Mart Keeps Plugging Away towards Pledge Goal

Our 12 local Wal-Mart and two local Sam’s Club stores are among our mostfastidious partners; in just a few months, they will close in on the $1 million gifttoward the Pediatric Cardiac Intensive Care Unit, a pledge they began in 2002.

Last year alone, their annual fundraising total surpassed $230,000; a size-able portion was gathered in just four weeks in May (our “Miracle Month”),when employees rallied to raise an impressive $47,217.

“For us at Sam’s Club, supporting our Children’s Miracle Network hospitalis really a reflection of who we are — both as individuals, and as a Sam’s Clubfamily,” said Daniel Brook, market manager for Rochester-area Sam’s Clubstores.

“I can’t say enough about the hospital and the work it does — I hearabout the healing and hope it brings to families all the time,” added TimBernard, a Rochester-area market manager for Wal-Mart stores. “Betweenhearing the success stories and touring the corridors first hand, our associ-ates have cultivated meaningful personal relationships both with the hospitaland the community we serve.”

Children’s Miracle Network partners

keep plugging away

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Dan Meyers of the WaterlooWal-Mart scans a CMNballoon.

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After years of waiting for technologicalevolution to yield a superior product,Golisano Children’s Hospital now hasaccess to the latest in magnetic reso-nance imaging (MRI) scanners — anopen MRI scanner.

This newest addition to thehospital — thanks to the Department ofImaging Sciences at the University ofRochester Medical Center — blends top-notch medical care with superior patientcomfort for local children who, eachyear, rely on more than 2,000 scans tohelp monitor ailments like seizures,sports-related injuries and childhoodcancers.

Conventional MRI scanners consistof a long tube, known as a bore, whichis three to five feet long. Patients usually

New open MRI scanner puts kids at easelie on their backs as they slide into thebore through an opening only 19 inchesin diameter— a terrifying prospect notonly for claustrophobic adults, but alsofor most children.

However, the open MRI scanner ismore physically welcoming than thetraditional scanner. The open versionresembles a clamshell on top, with opensides around the bore, so as to eliminatenerve-racking snug spaces.

“Aside from a high-qualitymachine, a successful scan requirespatient cooperation,” said Connie White,clinical operations director for theuniversity’s Department of ImagingSciences. “Unfortunately, lyingperfectly still for up to five minutes at atime for at least 30 minutes can be chal-

lenging for kids, especially if they areafraid of the machine.”

William Badger, supervisor of clin-ical laboratories, said, “With the newmachine, a parent or other adult may stayin the imaging suite right next to thepediatric patient, maintaining constantphysical contact with the child through-out the entire exam.

“We anticipate that the new scannerwill reduce the current need to scanpediatric patients under conscious seda-tion or anesthesia by 20 percent.”

This will reduce the overall proce-dure and recovery time, he added.

But the open design is just part ofwhat makes this new scanner child-friendly. Scans will also include alaser-light show of sorts called theAmbient Experience, a concept inventedby Philips Electronics that will go hand-in-hand with the new machine.

Thanks to rounded corners, as wellas halo lighting — which will allowpatients to choose a color to be reflectedaround the whole room — the new scan-ning room will create a calm space forchildren and their families. It will alsoinclude one wall on which technologistscan project pictures, and patients canchoose the picture — jungle, beach orcartoons, just to name a few.

“The logic behind the AmbientExperience is that if you distract thepatient long enough to watch a peacefulscene, it puts them in the right frame ofmind going into the scan,” White said.Also, a soothing effect is enhancedfurther by taking away the sharp cornersand bright, fluorescent lighting typicalof a hospital room.”

White said she anticipates that thescanner will be available to patients thisspring.

To learn more about how you canhelp keep Golisano Children’s Hospitalup-to-date with the latest high-tech careequipment, please call (585) 273-5948.

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* Students at Brockport High School danceduntil they dropped March 14 to 15 at the 35thannual Brockport High School LeukemiaDance Marathon. More than 120 studentsdanced for 12 hours and raised $14,000 forleukemia research underway at GolisanoChildren’s Hospital.

* On March 29, Vasisht Srinivasan raised$4,353 for Golisano Children’s Hospital at hisStrong Spells Magic Show. Vasisht is acurrent medical student at the University ofRochester Medical Center.

Special Thanks

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Many thanks to all of these groups and the countless others that continue to support our region’s only children’s hospital!

* The 6th annual Talent for Tots & Teens raised$,2716 on April 4. The event, organized by IdaWheeler, featured dozens of performances.

* The Pittsford Crew team organized an Erg-A-Thon fundraiser at Eastview Mall on April 5.The high-school rowers collected $16,500 in pledges for rowing on stationarymachines. Proceeds went to GolisanoChildren’s Hospital.

* Tops Markets organized the 2nd annualMonte Carlo Night on April 12 at Eagle ValeCountry Club. This casino-style fundraisergarnered $7,500 for the hospital.

* The Rochester Razorsharks PremierBasketball League donated more than $3,000to purchase outdoor furniture for the playdeck at Golisano Children’s Hospital.Congratulations to the Razorsharks on agreat season.

* Jen and Tim Brush surpassed the $100,000mark with the 6th annual Taylor BrushMemorial Dinner Dance on March 8. Despitethe weather, more than 300 people attendedand raised over $9,300 for the NICU. TeamTaylor has been raising money for the NICUfor six years.

Upcoming events

All of May, Amanda Padgham PhotographyFundraising Month. Amanda Padgham, a natural-light child and infant photographer,will donate 10 percent of proceeds from all sales from May sessions to GolisanoChildren’s Hospital at Strong. Don’t delay,sessions will book up quickly. Call (585) 764-2341 to capture precious memories of yourchildren while helping other kids, too. To seeAmanda’s natural light portraiture, visitwww.amandapadghamphotography.com.

May 31 and June 1, Miracle Weekend(10NBC telethon and annual Stroll for StrongKids). On Saturday, join in the fun at the 12thannual Stroll for Strong Kids at GeneseeValley Park, Rochester. On Sunday, tune into10NBC’s annual telethon to raise money forGolisano Children’s Hospital at Strong. Formore information on either event, call (585)273-5948 or visit www.gchas.org.

June 7, 2nd annual “NICU Tile-PaintingParty,” Flaum Atrium. Back by populardemand, this tile-painting party will benefitthe NICU at Golisano Children’s Hospital atStrong. Meet with current and “graduate”NICU families who also wish to make theirmark in a way that will be permanentlydisplayed outside the unit. For more informa-tion, call (585) 273-5948.

Golf eventsJune 5, “Holes for Hope” Golf Tournament(presented by RE/MAX and sister company,Prime Mortgage Corp.) June 21, 8th annual Screaming BeaverHockey Club Golf TournamentJune 25, B&L Wholesale Golf TournamentJuly 17, 8th annual WNY Optics GolfTournamentAug. 4, 9th annual Tim Milgate GolfTournamentAug. 4, 6th annual Kittelberger Charity GolfTournamentAug. 25, Ed Kaufmann Children’s HospitalClassic

For more information on the golf eventsabove, call (585) 273-5948.

June 14, 5th annual Clambake Fundraiser,presented by Team Ali-Gaiters.Join us for this family-fun clambake in honorof Ali Klube, to be held 2 to 7 p.m. Saturday,June 14 at the Honeoye Falls Fireman’sTraining Grounds on Monroe Street. The daypromises live music by Alabye, DJ servicesby Top Spin, a bouncy house, face painting,costumed characters for the kids, raffles anddoor prizes. Tickets cost $20 in advance, $25at the door, and benefit Golisano Children’sHospital at Strong. Children 12 and youngerare free. To reserve your ticket in advance orfor more information, call (585) 624-4759 or(585) 346-3744.

July 26, 19th annual Ten Ugly Men Festival,Genesee Valley Park, Rochester. Ready tohave some fun and support GolisanoChildren’s Hospital at the same time? Ventureout to the TUM Festival from 11 a.m. to 8 p.m.for some serious dodgeball, bocceball andkickball tournaments — not to mention a 5Krace and tunes by the Gin Blossoms. Visitwww.tenuglymen.com for more informationor to purchase tickets. To volunteer, call (585) 273-5948.

Aug. 23, 4th annual Fairport Music and Food Festival, Fairport Junction Canal Area.Tempt your taste buds and hear tunes at thisall-day festival, featuring multiple bands,kids’ activities, karaoke, and a smorgasbordof Fairport foods. Learn more by visitingwww.fairportmusicfest.com.

Sept. 8, Golisano Children’s HospitalClassic. Join us for one of Rochester’slargest golf tournaments of the year!We’ll start the day with lunch andregistration at 11 a.m., and then spreadover four area courses – Monroe GolfClub, the Country Club of Rochester,Irondequoit Golf Club and RavenwoodGolf Club – with a shotgun start at 12:15 p.m. Dinner follows at MonroeGolf Club. For additional information, to purchase tickets or to become a sponsor, call (585) 273-5948.

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