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5 RRiilleeyy hhiittss hhiigghh nnoottee wwiitthh EEvvaannssvviillllee ffaammiillyy

Lifesaving care inspires dad to

give back.

7 RRiilleeyy’’ss ddrriivviinngg ffoorrccee

John Andretti, Jeff Gordon

and Tony Stewart join in

supporting Riley.

11 CCrreeaattiinngg rrhhyytthhmm ffoorr RRiilleeyy

Indiana students dance for Riley.

13 IInnssttaanntt bboonnddss aanndd lliiffeelloonngg ffrriieennddsshhiippssRiley families find comfort and

support from each other.

16 HHooppee aammiidd ddeessttrruuccttiioonn Riley pediatric cardiothoracic

surgeon Dr. John Brown helps a

Haitian earthquake survivor.

Cover: NASCAR champion and Riley advocateJeff Gordon takes a moment to meet CampRiley veteran Matt Goodsman.

CC OO NN TT EE NN TT SS

Magic through aMost girls aren’t con-

cerned with prom beforetheir 16th birthday, but for3-year-old Olivia Pierce ofHobart, Ind., the dressshopping and magicalevening arrived muchsooner than expected.

On May 7, 2010, Oliviaand more than 325 RileyHospital cancer patients,their families and staffdanced the night away atthe inaugural Riley CancerCenter Prom. Women forRiley, Riley Children’sFoundation and the RileyCancer Center organizedthe event to give patientsand families an enchantedevening to celebrate life.

“We wanted to provide a special night for them,” said Krysta Fox, aWomen for Riley member.

Boys and girls of all ages including Olivia were fitted with prom attire three weeks before the big day during “Promingdales.” Riley social workers and Women for Riley members helped each child findthe perfect outfit from the more than 1,000 dresses, suits, shoes, pursesand accessories that were donated. Patients also enjoyed special treat-ment right before prom as local stylists provided manicures, makeup andhair styling.

Fairbanks Hall was transformed for the big night with Harry Potterinspired touches. Inpatients arrived via “Hogwarts Express,” themonorail connecting Riley to Fairbanks and other locations. Prom attendees enjoyed dancing, face-painting, a magician, food and much more.

But it wasn’t the disco ball or spinning lights that made the dancefloor sparkle; it was the bright and shining smiles of children. Oliviawas particularly gifted on the dance floor. Pretty in pink, she was accompanied by her mother and grandmother, a first-time experiencefor all three.

At 3 months old, Olivia received a shocking diagnosis of retinoblas-toma, cancer in her left eye. Her mom Shannon had noticed somethingodd about Olivia’s eye in photographs. The family left their Disney vacation early to see their pediatrician. Olivia was immediately referred to Riley Hospital. Tests confirmed the heartbreaking news. “I felt completely helpless,” added Shannon. “My 3-month-old had cancer.”

Within weeks Olivia was scheduled for surgery to remove her left

child’s eyes

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A u t u m n 1 0 2

Magic through aeye, as her cornea was a massivetumor. Her Riley surgeons, Dr. DavidPlager and Dr. Daniel Neely, believedthe cancer had been present sincebirth and that she never had full eyesight. They also discovered Oliviahad cancer in her right eye – bilateralretinoblastoma.

Surgery was postponed to beginchemotherapy coupled with ExamUnder Anesthesia (EUA) proceduresevery three weeks to monitor the tumors. Her left eye was successfullyremoved, and doctors continue towatch her right eye.

“Today, Olivia is still fighting herbattle, but she’s leading a normallife. She plays basketball and soccer,and loves to ride her bike,” saysShannon. “She has overcome somuch in her short life.”

At prom, Olivia wasn’t a girl whohad endured 29 eye procedures. Therewere no IV’s, monitors or hospitalgowns – just three generations ofwomen dancing the night away. Andfor a few hours, cancer didn’t exist.

child’s eyes

Visit RileyKids.org/prom

or email [email protected]

for information on the 2011 Riley Cancer

Center Prom.

Upper right: Olivia Pierce enjoys being dipped by RileyChildren’s Foundation staffmember Elizabeth Jacques.

Middle: Riley families enjoy theRiley Cancer Center Prom.

Bottom left: Jalaia Anderson ispicture perfect.

Bottom right: Olivia Pierce andEmma McCalister dancing on airtogether.

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3 R i l e y M e s s e n g e r

N E W S B R I E F S

Accomplished Hoosiers join Board of Governors

Two business leaders joined the Riley Children’s Foundation Board of Governors in May. The Foundation is fortunate to have their astute leadership.

John T. Thompson is the chairman and CEO of First Electric Supply Company, LLC; Thompson Distribution Company,Inc.; CMID, Inc.; and BC Countertops, Inc. He is a graduate of Cornell University and ColumbiaUniversity. He serves on numerous nonprofitboards and government committees. His rolewith Riley Children’s Foundation includes servingon the Camp Riley committee. John resides in Indianapolis.

Rick Johnson is the president of Johnson Ventures. He is a graduate of Indiana University.The Johnson family has philanthropically sup-ported the IU Kelley School of Business, site ofthe Johnson Center for Entrepreneurship and Innovation. He will serve on the Riley Children’s Foundation finance committee. Rick resides inColumbus.

Camp Riley builds confidence that lasts a lifetimeCamp Riley for Youth with

Physical Disabilities has providednew experiences, new friends andnew achievements to kids for 56years. Camp Riley takes place atBradford Woods, Indiana University’soutdoor recreation center located 20miles southwest of Indianapolis.Nearly 225 children attended sixdifferent Camp Riley sessions duringa five-week span this summer. Eachsession focused on a different theme,but all included traditional campingactivities like horseback riding, artsand crafts, canoeing, swimming andoutdoor games. With the help of a$1.75 million Lilly Endowmentgrant through Riley Children’s Foun-dation, future campers will soonenjoy an indoor riding facility andcovered sports court.

3 R i l e y M e s s e n g e r

Indiana communitiescelebrate Riley Hospital

Riley family reunions, annual luncheons and ice cream socials are poppingup throughout Indiana thanks to regional Riley leadership teams. The eventscelebrate Riley families, local referring physicians, regional Riley clinics andgenerous donors. The goal is to unite Riley families and create greater aware-ness of Riley’s partnerships around the state.

� On June 26, the Lafayette community hosted a Riley family reunion at Columbian Park with ice cream and free passes to the zoo/waterpark.

� On August 4, Evansville Riley families and business leaders gathered for dinner and a special program at Old National Bank overlooking the OhioRiver. Deaconess Gateway Hospital in Evansville offers nearly 20 Riley clinics.

� On September 30, the second annual Fort Wayne Luncheon will take place on the IPFW campus. Local Riley families and referring physicians will share their stories.

� On November 17, 1,300 donors and partners will attend the Riley Annual Luncheon in Indianapolis. This year’s luncheon will celebrate the successful completion of the Hope Happens Here campaign.

Beat the summer heatwith a Blizzard

During the fifth annualMiracle Treat Day onThursday, August 5, proceedsfrom Blizzard® sales benefited Children’s MiracleNetwork hospitals. Lastyear, Dairy Queen locationsthroughout Indiana raisednearly $200,000 in one dayfor Riley Hospital.

John T. Thompson

Rick Johnson

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A u t u m n 1 0 4

Riley Children’s Foundation launched the Riley Champions program in2008 to honor Riley Hospital for Children patients who have inspired com-munities with their courage and commitment to help others, despite facingdifficult medical challenges. Do you know a deserving Riley kid between 8 and 18? Visit www.RileyKids.org/champions to nominate your Riley Champion. Nominations are accepted year round. 2010 Riley Championswill be announced in November.

Proceeds from golf tournament aid purchase of diagnostic camera A new diagnostic camera in the Pediatric Ophthalmology Clinic at Riley

Hospital is the result of a dare made years ago by a Greencastle, Ind., man.Blind in one eye from a childhood injury, Terry Clodfelter challenged hisfriends to wear bandanas while playing golf after he was chastised for his poorperformance. That was 17 years ago and the beginning of the One-Eyed GolfTournament held every summer in Greencastle. Clodfelter recently delivered a$15,500 check to help cover the cost of a new diagnostic camera. The cameracan photograph the eyes of patients as young as 2, making their visits to theophthalmologist less stressful. The 2010 tournament will be held on September11. For information visit www.clodysoneeyegolf.com/.

More than 4,000 expected at Don Sc humacher Racing Open HouseFor the fifth-straight year, Don Schumacher Racing (DSR) is teaming

up with its NHRA Full Throttle Drag Racing Series sponsors and driversto provide another spectacular Open House for NHRA fans and sup-porters. The event will be held at its Brownsburg, Ind., race shop beforethe U.S. Nationals on Friday, September 3, from 10 a.m. to 3 p.m. Withmore than 4,000 attendees expected, the Indy Hi-Winders Car Club willhighlight the event with its popular Car and Motorcycle Show as DSRaims to exceed a five-year event total of $100,000 in funds voluntarilyraised for Riley Hospital for Children.

KCS is back in season Administrators and faculty will

again teach students the value ofphilanthropy through Kids Caring &

Sharing (KCS) thisyear. Last year,nearly 600

schools raisedmore than

$600,000 for RileyHospital. Is your

school involved? Become a Miracle School by raising $1 perstudent. For free fundraising suppliesand assistance to start a KCS program at your school, visitwww.RileyKids.org/kcs or contactthe KCS coordinator at Riley Children’s Foundation at 877-867-4539.

Nominate your Riley Champion

3 R i l e y M e s s e n g e r

2009 Riley Champions (L to R): Cleat Winkler, Tatum Parker, Jac’Quel Jones, Nick Long, Sarah Heimann and Joel Paschen

We Love Riley!

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5 R i l e y M e s s e n g e r

follow-up, and her facial scar is fad-ing. “You wouldn’t really even knowit’s there unless you got up close,”Logan says.“She’s the coolest little cucumber

ever,” Sarah adds. “Miss Cool”wears pink strap-on sunglassesaround the house, totes a purse andloves dressing up in big shoes. “I’mworried about when she’s 16,” hermother laughs.Logan is a talented musician who

plays saxophone and several otherinstruments, gives private lessons,and works as a woodwind and brass repair technician. Last fall, he organized a concert to benefit RileyHospital and is planning an evenbigger one in September. He hascontacted potential sponsors, andlocal music stores are helping himpromote the family friendly event.“I hope it will keep growing every

year,” he says. “I feel like I shouldgive back for what Riley did for Ella– they saved my daughter’s life.”

While he’s practicing, two littlegirls are underfoot and makingmusic, too – blowing raspberries on their hands in pretend trumpetpractice.

their appointment with a surgeon.Ella’s cyst ruptured that night at

the hotel. Unfamiliar with the cityand panic-stricken that the breakwould open Ella’s brain to infection,Logan called an ambulance to takeher to the Riley Hospital emergencyroom. “At that point, we didn’t knowif the situation was life-threatening,”Sarah recalls. Within days, Ella underwent sur-

geries to remove the cyst from twodirections. Pediatric otolaryngologistBruce Matt, M.D., worked firstthrough an “H”-shaped incisionacross her nose. Then pediatric neurosurgeon Laurie Ackerman,M.D., accessed Ella’s frontal lobethrough a wavy incision from ear toear across the top of her head. “She was blind for 24 hours, and

that was the worst part of it for me,”Sarah says. “But she didn’t miss abeat. She was released from the hospital four days later, and we went to dinner on the way home.” Ella was “all clear” at her one-year

Riley’s care strikes a chordwith Evansville family

NNo one would call a stroller collapsea fortunate incident. But for 2-1/2-year-old Ella Dyer, a seemingly in-nocent bump on the nose led toearly treatment of a potentially serious medical condition – and herfather’s musical thank you to RileyHospital for Children.After Ella and her twin sister

Emma tumbled from their stroller in May 2009, their parents, LoganDyer and Sarah Karim, thought themark on Ella’s nose was a bruise.But the little red bump kept grow-ing. Her concerned parents tookElla to the emergency room at theirhospital in Evansville and then to anear, nose and throat specialist. A CTscan confirmed missing bone and asaclike growth called a dermoid cyst.An MRI through Deaconess Riley

Children’s Specialty Center inEvansville revealed that the growingcyst had pushed toward Ella’s brain.Faced with their daughter needing pediatric neurosurgery, the familydrove to Indianapolis a day before

Emma Dyer sweetlyhugs her twin sister

Ella, who receivedlifesaving care at

Riley Hospital.

Visit RileyKids.org/stories to watch Ella’s story.

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A u t u m n 1 0 6

I feel like I should give back for whatRiley did for Ella – they saved

my daughter’s life.”- Logan Dyer

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diagnosed with leukemia. The foun-dation focuses on funding programsthat improve pediatric cancer patients’ quality of life, treatmentprograms that increase survivorship,and medical research to find a cure.Gordon’s ninth annual CelebrityBowl in Indianapolis this summeradded more than $300,000 to the$1.5 million that the event alreadyhas raised for the Jeff Gordon Chil-dren’s Foundation Pediatric ResearchFund at Riley.

Gordon involves many otherdrivers and personalities to make his Celebrity Bowl a success. He alsoshares his own interest in Riley Hospital with his huge fan base.“NASCAR is, at its core, a family,and a very generous family at that,”Kriger says.

Tony Stewart established hisfoundation in August 2004 – thesecond of about 18 drivers who nowhave done so, according to JoniThompson, executive director of theTony Stewart Foundation. Stewartchose to support three causes near

“There are a lot of great things togive to, but to me, there’s nothingmore important than making a childwell,” he says. “Now it’s a real mis-sion to raise money and awareness.”

Andretti calls visiting Riley patients“life-changing” for himself and othershe has drawn into his efforts: “Ascompetitors we see these kids fighting a much more difficult fightthan we’ll ever have, with commit-ment, passion and a positive attitude.”

Four-time NASCAR championJeff Gordon would agree that meetingpatients, families, physicians and researchers at Riley Hospital remindshim why his fundraising efforts areimportant. “Jeff is thankful for hishealthy family and for a wonderfulcareer, and he would be the first totell you that he takes more awayfrom every visit than the kids andtheir families do,” says Trish Kriger,excutive director of the Jeff GordonChildren’s Foundation.

Gordon launched his Charlotte-based foundation in 1999, after theson of his former crew chief was

7 R i l e y M e s s e n g e r“As racers and competitors we see these kids fighting a much more difficult fight than we’ll ever have, with commitment, passion and a positive attitude.”

heckered flags wave in Indyduring May and July, but racing’s support of Riley Hospital is a year-roundspectacle. Riley benefits

from close relationships with driversJohn Andretti, Jeff Gordon andTony Stewart – not just financially, butalso by their hands-on commitmentand support from fans and colleaguesthroughout the racing industry.

Fourteen years ago, Andretti andthen WIBC radio host Dave Wilsonenvisioned “a fun little match race,”Andretti recalls. In 2009, their annualKroger Race for Riley presented byCheerios at New Castle MotorsportsPark raised a record $207,586.“We’ve been able to grow Race forRiley through great partners andgreat relationships, especially Krogerand General Mills,” Andretti says.

“It’s not proceeds,” he adds. “It’s100 percent going directly to thehospital.”

Andretti has long personally supported Riley Hospital, where hisbrother and sister once were patients.

CAndretti, Gordon and Stewart

drive home support for Riley

Noah Sowder and John Andretti Jeff Gordon and Bailey Moore Braden Tamosaitis and Tony Stewart

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A u t u m n 1 0 8

to his heart: children who face hard-ships because of medical difficulties or disabilities; the protection of animals; and fellow drivers injuredin motorsports activities.

Camp Riley for Youth with Physical Disabilities is among manyspecialty camps in several states thatStewart’s foundation helps. “Tonywants these kids to have the chance,in the summer, to simply be a kid,”Thompson says.

Stewart’s personal involvementalso ensures the success of fundraiserslike the sixth annual Gillette FusionProGlide Prelude to the Dream.Held in June at Stewart’s EldoraSpeedway in Rossburg, Ohio, theall-star race benefited four children’shospitals, including Riley. The fiveprevious races have collectivelyraised more than $2.5 million.

Thompson attributes the close relationship between the racing industry and children’s hospitals likeRiley to a culture among the drivers:“The drivers are so visible. Theyhave such a huge fan base, andthey’re following the examples ofthese leaders.”

- John Andretti

As racers and competitors we see these kids fighting a much more difficult fight than we’ll ever have, with commitment, passion and a positive attitude.”

Top: Tony Stewart chats with CampRiley regulars Alex Nodine (left) andCaleb Lammert (right).

Middle: Jeff Gordon visits with TatumGumpf (left) and Tatum Parker (right).

Bottom: Andretti’s annual Kroger Race for Riley gives fan a chance tochallenge the driver on the track andsupport Riley.

Andretti, Gordon and Stewart drive home support for Riley

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9 R i l e y M e s s e n g e r

Riley runs interference

for teen

transplant on January 15. ThroughMemorial Day, the high schooljunior had only been home 13days. Cody is currently battlinggraft versus host disease of the skin and gut along with Aspergillus lesions on his brain.

Through every test and proce-dure, Terri has made herself astrong and proactive advocate forher son. She believes that Cody hasreceived excellent care from Dr.Robert Fallon, director of pediatrichematology-oncology; Dr. PaulHaut, director of pediatric stemcell transplantation; and his team

“Everything about Cody makes me proud,but the most is how he’s endured this.

He is so modest, he doesn’t realize how much he has

inspired people.”

CCody Mitro, 17, “eats, breathesand sleeps football,” says his momTerri Mitro. When he can, Codyplays football himself, and his bed-room is a Colts shrine. So imaginehis excitement in November 2006,when the Make-a-Wish Foundationarranged for Cody to watch his favorite team practice.

The autographed jersey and teammembers’ photos Cody received thatday are still part of his room décorat home in Woodburn, Ind., nearFort Wayne. They mark a brightspot in four tough years that Codyhas battled severe aplastic anemia, adisease in which the bone marrowstops making enough red blood cells,white blood cells and platelets forthe body.

On April 27, 2006, the day beforehe was diagnosed, Cody was walk-

ing his usual mile home from EastNoble High School but didn’t havethe energy to make it; a police officer brought him home. Terri hadalready scheduled an appointmentwith Cody’s doctor, thinking her son looked pale and lethargic. Thedoctor arranged Cody’s admission to Riley Hospital for Childrenwithin the hour.

“This kid’s been through themill,” Terri says. Cody has had twoports, two central lines and countlesstransfusions. Two ATG (antithymo-cyte globulin) treatments were un-successful. He continues to fight offfungal, viral and bacterial infections.His medications have caused kidneydamage that will require ongoingtreatment. Cody was admitted toRiley Hospital on January 5 of thisyear and underwent a stem cell

- Terri Mitro, Cody’s mother

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A u t u m n 1 0 109 R i l e y M e s s e n g e r

Cody couldn’t attend the Riley Promin May, but the two upheld thespring tradition by getting dressedup, walking around the hospital andenjoying some ice cream. “He lookedso handsome in his tux, and theyhad a really good time,” his momsays.

Coping with Cody’s illness hasgiven both teenagers maturity beyondtheir years, she adds. “Everythingabout Cody makes me proud, butthe most is how he’s endured this.He is so modest, he doesn’t realizehow much he has inspired people.”

of physicians and nurses. “The doc-tors are awesome, but sometimesthey don’t want to worry the par-ents,” she says. “They’ve learned tocommunicate closely with me.”

Terri, a single mom who has losther job, relies on support from herdaughter Christine and son-in-lawSteve; son Joe and daughter-in-lawKristin; and her mother and sister,who live in Toledo. “Cody is closewith his family, and they’ve beenawesome,” she says.

Cody also counts on Karly, hisgirlfriend of two-and-a-half years.Because of the risk of infection,

Cody and his girlfriend Karly share a warm embrace.

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11 R i l e y M e s s e n g e r

t age 2, Eric Davis was diagnosed with aplasticanemia, a rare blooddisorder. He wastreated until age 15,when doctors determined Ericneeded a stem cell

transplant and referred him to RileyHospital. Eric received the transplantin 2004. The two-year recovery con-sisted of three rounds of chemotherapyand 10 stays at Riley Hospital.

“Riley Hospital is a very specialplace to me,” said Davis, now a senior at Indiana University andpresident of the 2010 Indiana University Dance Marathon(IUDM). “I owe my life to Riley.”

Eric’s medical journey inspiredhim to make a difference for otherRiley families. He participated inthe inaugural Carmel High SchoolDance Marathon and now leadsIUDM’s student executive committeethat has nearly 350 members. In November 2009, nearly 1,500IUDM participants celebrated arecord $1.5 million in proceeds forthe Ryan White Infectious Disease Center at Riley Hospital. Buildingon prior successes, Eric’s team remains determined to raise anunprecedented new level.

Roots of the Riley DanceMarathon Program date back20 years. Then a sophomore atIU, Jill Stuart Waibel startedIUDM in honor of her friend –Riley patient and AIDS advocateRyan White. Ryan died in1990. Even Jill, a true visionary,

$$11..88million in support for RileyStudent leaders choreograph

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A u t u m n 1 0 12

of Franklin Central High School in Indianapolis, is responsible for herschool’s dance marathon. She was apatient at Riley Hospital and providedleadership and inspiration for theevent. A few years ago Bailey washooked up to the Berlin Heart. Themachine kept her alive for five monthsbefore her heart was strong enough tosurvive. She spent those months andmany other visits to Riley Hospitalbeing treated for aortic stenosis, whichwas diagnosed when she was only afew days old.

“Imagine what this world would belike without the benefit of Riley Hospital.It’s not only the fact that sick childrenhave Riley heroes, it’s the fact thatthose heroes won’t quit until they areno longer needed,” Hunsberger said.

incredible young lady and loved Rileymore than any person I will everknow.”

These student efforts extendstatewide.

“Riley Hospital is the only compre-hensive children’s hospital in the state,and many families turn to Riley in timesof crisis,” said Kelly Deranek, formerSaint Mary’s College Dance Marathonpresident and a South Bend native.

More than anything, students aredriven by a common motto: “Westand for those who cannot.”

“We are always inspired by Rileykids – their ability to overcome any-thing and dream big,” said LindsayVan Houten, president, Purdue University Dance Marathon.

The young leaders are reminded of

could not have predicted that IUDMwould raise more than $8.5 millionin 19 years.

Since then, student leaders at 27 Indiana high schools, collegesand universities have produced amazing results. During the 2009-10academic year, $1.89 million wasraised for research and clinical programs at Riley. Often times, thoseinfluential young leaders have theirown Riley stories.

Bailey Hunsberger, a 2010 graduate

Riley Hospital is a very special place to me. I owe my life to Riley.”“ - Eric Davis

Ben Cohen, president of the 2009Butler University Dance Marathon,raised more than $16,000 to supportButler’s student-run event.His sister, Sarah, was aRiley patient who died ofEwing’s sarcoma on August 13, 2009. Duringthe event Ben was giventhe Sarah Michelle CohenSpirit Award in her honor.

“She is my inspiration,”said Cohen. “She was an

the important role they play whentheir hard work pays off in a life-enriching experience known as a dancemarathon.

Davis emphatically said it best, “Idon’t know of a greater cause.”

Main: Students at Marian High School inMishawaka do a dance for Riley.

Left: IUDM participants proudly display theamount they raised for Riley Hospital.

Middle: Bremen High School students performing their student-choreographed dance.

Right: IU students celebrate another successfulRiley dance marathon.

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F Elementary School in Martin County,came to Riley Hospital first on December 17, 2009. Jeffrey is “a loving, caring boy who’s always think-ing of someone else,” says his momStacey. During his Riley stays, he especially misses his friends and pets.

Matt, a senior at Evansville NorthHigh School, and his mother ShellyLinenburg arrived on January 16.Matt’s three siblings were tested as potential bone marrow donors; Lindsay, 21, was a perfect match.

Evan, a junior at Franklin Community High School, arrived January 27 but spent most of his first42-day stay in the ICU with a range oflife-threatening complications beforehe was transferred to the fifth floor.

Four kids whose paths never wouldhave crossed if not for a commonenemy – acute myeloid leukemia(AML) – formed a close bond on thefifth-floor oncology unit at Riley Hospital for Children earlier this year.

Matt Donovan, 17; Evan Meade,16; Jeffrey Crowder, 10; and KeelyQuinn, 3½, all have AML. Jeffrey iseager to go home, having completedfive rounds of chemotherapy, whileEvan is in the midst of his five rounds.Keely is receiving six rounds ofchemotherapy over roughly eightmonths. Matt received three rounds inadvance of his June 4 bone marrowtransplant. The average hospital stayfor each treatment is 28 days.

Jeffrey, a fifth grader at Shoals

Matt’s mom first saw Evan’smom Patty Meade in the hallway. “I remember feeling exactly the wayshe looked,” said Shelly, who of-fered a listening ear.

Matt and Evan also clicked rightaway.

The Quinns arrived from SouthBend last and were assigned the roombetween Matt and Evan. Keely hasbeen a Riley kid since she was bornprematurely with Down syndromeand several serious medical issues.Since Keely was diagnosed with AMLin February, her mom Michelle hasrarely left her side. Shelly and Michelleare both nurses.

Michelle describes Keely as “a verysocial 3-year-old who will not stay in

Common circumstances cultivate remarkable bond

among Riley families

13 R i l e y M e s s e n g e r

“The agony of diagnosis and the months at a time in the hospital – that will all go away,” Michelle says.

“All I’ll remember are these great people.”

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A u t u m n 1 0 14

friends are special because they “getit,” the women agree.

“I just wanted to get done and gethome,” Stacey Crowder says. “That’swhere you belong. But friends here understand. You don’t always talkabout leukemia; after you’re here anddeal with it for the first month, youtalk about common interests.”

“The agony of diagnosis and themonths at a time in the hospital – thatwill all go away,” Michelle says. “AllI’ll remember are these great people.”

“This will be forever,” she adds:“Their graduations. Their weddings.Milestones for Keely. I know I cancount on them.”

thought I’d be with small kids so itwas good to have someone my age.”

Evan is a football player who excelsin academics and plans to become adoctor. “Meeting Matt was good because I finally found someone myage in sports and going through thesame stuff,” Evan says. As for Keely“it’s been something special since thefirst time we met.”

“She has them twisted around herlittle finger,” Shelly laughs.

As the mothers became friends,their families followed suit. At home,they stay in touch and follow eachother through CaringBridge.com.While each family appreciates tremen-dous community support, Riley

her room. She just walked into Evan’sroom and said hi. He was very sick atthe time, but he leaned over and saidhi back.”

Keely ran back to her room, got aflower and took it to Evan. “The bondwas immediate,” Patty says.

The boys soon were entertainingKeely with bubbles, markers and toys.When they took up Nerf guns, theymade sure Keely had one, althoughshe could barely hold it.

Keely also was the catalyst for Jeffrey joining the group. “Jeffrey didn’t start hanging out with theolder boys until Keely came in,”Stacey says. “It’s done him a worldof good. He understands other people are in the same situation.”

Matt, a gifted athlete who hopes tostudy business at Indiana Tech in FortWayne and play lacrosse with hisolder brother, says of his Rileyfriends: “Keely is very energetic.Evan is funny and outgoing. I

Left: Matt, Keely and Evan passing the time together. Middle: Evan and Matt surroundedby IU football players. Right: Jeffrey and Evan at the 2010 Riley Cancer Center Prom.

Above: Matt and Keely bonded immediately and definitely know how to lift each other’s spirits.

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15 R i l e y M e s s e n g e r

The following summer after I hadturned 9, I attended a two-weekCamp Riley session and experiencedmy first extended time away fromhome. As soon as my parents left, Ifelt homesick and lonely.

The next morning, we went tobreakfast and started activities. Afterarchery and swimming, I had myown group of friends. By the timecamp ended, I had canoed for thefirst time and swam across the lake.I couldn’t wait for the next summerso I could see my friends again.

I attended camp every summeruntil I turned 18. In 2007, I returnedto Camp Riley as a cabin counselorand enjoyed working with campersthroughout the summer. The followingyear I was promoted to the programstaff and ran the various programsBradford Woods offers Riley kids.

Last summer, I designed and

My Camp Riley experienceby Ben Goshorn-Maroney

WWhen I was 8 years old, I distinctlyremember my parents sitting me downon the couch between them. Theyshowed me a brochure with picturesof trees, lakes and happy smiles andasked if I’d be interested in a campfor kids with disabilities.

I was born with a rare genetic disease that caused the bones in myhands and legs to either grow irregu-larly, or not at all. At 9 months old, I underwent surgery at Riley Hospitalto have my legs amputated. I receivedmy first set of prosthetic legs threemonths later and began learning towalk. My parents decided to homeschool me so I never understood theconcept of being different, disabledor even bullied. My brothers and sis-ters were my playmates. So when myparents showed me pictures of thiscamp, I simply asked, “Will there belots of other kids there?”

implemented the inaugural musicprogram at Bradford Woods. Facili-tating Riley campers painting withdrums, playing songs withboomwhackers and recording theirown CDs was an amazing experiencethat I wouldn’t trade for anything.The smiles on the campers’ paint-splattered faces and their excitementat playing musical instruments confirmed that they felt the same joy I did. This summer my involve-ment with Camp Riley continued as an intern at Riley Children’sFoundation.

Camp Riley has been one of thebest influences in my life. The socialchallenges of college and work feeleasy now, and I can hardly think of a time when I felt like a personliving with a disability.

I hope I was able to give to others,in some capacity, the wondermentthat I myself felt as a Riley camper.

Above: Ben combines his passion forCamp Riley and music to bring joy tocampers like Lauren Coles.

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A u t u m n 1 0 16

Hospital to ensure a full recovery. The reality that doctors had no way

of pinpointing the initial cause ofdamage to her heart made her casemore difficult to remedy. Six of the 25cords that support her heart’s mitralvalve were fractured, allowing bloodto leak into her heart and fluid intoher lungs. Her small heart is finallypumping strongly for the first time.

On January 12, 2010, Jovanie andher mother were on their way to visitthe hospital in Port-au-Prince. Theearthquake caused the building to collapse and tragically took hermother’s life. Ironically, that same disaster provided the rare opportunityfor Jovanie to receive the needed treatment and care that her family hadbeen unable to access previously.

Jovanie was taken in by her aunt,who teaches at a local orphanage. Ateam of doctors from New Jerseylearned of Jovanie’s condition andcommunicated her story to Dr. DeonVigilance, a Clarian cardiothoracicsurgeon, who in turn reached out toDr. Brown.

Dr. Brown contacted the RotaryClub’s Gift of Life program, whichhelped obtain a visa for Jovanie totravel to Indianapolis and partiallycovered her medical costs. “Jovanie isthe fourth child treated this year,” saidJim Graham, local coordinator for theprogram.

At first sight, Jovanie walked awaywith nothing from the rubble of theearthquake. But through the course oftrauma and devastation, caring andgenerous hearts emerged to put her in skilled hands. While it’s early to determine if more surgeries are in Jovanie’s future, the prognosis is hopeful.

Riley Hospital who led a team of 10doctors throughout the four-hourprocedure. “She was one of thesickest children I have ever seen suffering from severe heart failure.”

Jovanie and her aunt DalianieMogene stayed at the Ronald McDonald House at Riley Hospitalfor several weeks following the sur-gery before she was released fromcare. Doctors felt it was crucial for her to remain close to Riley

Eight months ago, Jovanie Mogene was found buried

among rubble following the catastrophic earthquake in Haiti.

For three days her small body fought before she was miracu-

lously rescued. Three months ago the 4-year-old was again

fighting hard for life, this time a far distance from home.

Hope finds Haitian girl amid destruction

JJovanie continues to recoverfrom open heart surgery she had atRiley Hospital for Children on April29, 2010. Doctors anticipate thesurgery will remedy a heart condi-tion that has hindered her for a majority of her young life. Surgeonsare pleased with her progress thusfar and hope to see her fully recover.

“This was quite a dramaticcase,” said Dr. John Brown, a pediatric cardiothoracic surgeon at

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17 R i l e y M e s s e n g e r

Maple Creek Middle School princi-pal Mark Seele placesgreat emphasis onteaching students the value of helpingothers without expecting anything in return. Seele alsounderstands the important role thatRiley Hospital playsaround the state,which is why he hasbeen a longtime sup-porter of Kids Caring & Sharing. Forthe past couple of years, Maple Creekhas earned Miracle School status byraising at least $1 per enrolled student

for Riley Hospital.In May, the school had a unique

opportunity to support Riley. Seele and the Maple Creek

Maple Creek Islanders beat their drums for Riley families

Islanders, the school’s steeldrum band, drove fromFort Wayne to Indianapolisto perform for Riley familiesat the Indianapolis MotorSpeedway. The group enjoyed the experience despite encountering a flat tire. “Nothing could’ve

stopped us from beingthere,” said Seele. “I wasso glad our kids had thechance to gain perspectivefrom the Riley families

present. It was a great learning experience and rewarding chance to act as service ambassadors on behalf of our school.”

Concord High School potters craft $20,000 for RileyOn his drive home in the fall of

1999, Bob Beiber pondered a way tofoster arts awareness in the Elkhartcommunity and engage his studentson a new level. He noticed aMarathon gas station across thestreet, and suddenly his plan becameclear. The chair of Concord HighSchool’s art department would organize the first ever “Potter’sMarathon” with proceeds benefitingRiley Hospital.

He presented the idea to schooladministrators, colleagues and students the next day. A team of 10

energetic students agreed to pioneerthe first marathon. They raisednearly $2,200 and created more than140 pieces of pottery during the 24-hour, non-stop spinning event.

That was 11 yearsago. Now each Novem-ber Beiber and his teamspin pottery while on-lookers encourage theirefforts. When the pot-tery dries, the studentstool, fire and glaze thepieces. Proceeds from astudent-hosted pottery

sale in December go to Kids Caring& Sharing.

This year’s 35-member varsityteam generated 500 pieces of pottery and $20,000. To date, the

annual event has raisedmore than $100,000 forRiley.

“These students display the definition ofhard work and integrity,”Beiber said. “These un-sung heroes of the schoolare motivated by nothingother than their hearts.”

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Mission drives fundraising effortsIndianapolis is known as the racing capital

of the world. For Riley, being located in theracing capital has translated into years of opportunities and generosity for the childrenand families at Riley Hospital and Camp Riley.

Tony George and the Hulman-Georgefamily, John Andretti, Jeff Gordon and TonyStewart have led the way in reaching out tochildren. This issue pays tribute to their efforts and to the hope that they have givento so many. Individually they have raisedhundreds of thousands of dollars to support the general benefit of Riley Hospital andpediatric cancer research and to send children with physical disabilities to Camp Riley.Just as importantly for these children, many of whom face difficult daily challenges, Jeffand John have spent many hours at the hospital with patients, and Tony has invited Rileycampers to participate with him in several events.

At Riley Children’s Foundation, we believe that donors like John, Jeff and Tony stayinvolved because they know their contributions directly support the causes in whichthey believe. Since founding and building Riley Hospital 86 years ago, Riley Children’sFoundation and the hospital have established a trust with the people of Indiana. We feela strong responsibility to the children, families and communities throughout the statewho look to Riley to care for the sickest-of-the-sick, most chronically ill and seriouslyinjured children. Equal to our responsibility to children and families is our commitmentto steward the gifts that donors generously give to support the Riley mission.

Keeping fundraising costs as low as possible remains a high priority for all of us atthe Foundation. Our current fundraising costs are 15 cents per dollar raised. We bench-mark our fundraising operations against the 27 most prominent children’s hospitals inthe country. In this group, Riley ranks fifth in overall lowest cost-per-dollar raised. Wepromise all of our donors, from the students who give $1 to the members of the racingcommunity and friends throughout the state, that we will continue to challenge our-selves to find additional ways to reduce costs and increase support for Riley Hospitaland the children we are privileged to serve.

Last year families from all 92 Indiana counties made more than 250,000 inpatientand outpatient visits to Riley Hospital. Thousands more patients were seen by Rileyphysicians in clinics conducted throughout the state. The compelling needs of these children and families are what drive our mission. With Hoosiers’ tremendous generositywe are determined to continue to meet these needs while representing the best interestsof our donors, friends and partners.

A u t u m n 1 0 18

Riley Messenger

AUTUMN 2010

Dedicated to friends and partners of Riley Children’s Foundation

Riley Children’s Foundation30 S. Meridian St., Suite 200Indianapolis, IN 46204-3509

RileyKids.orgE-mail: [email protected]

Jim MorrisChairman, Board of Governors

Kevin O’KeefePresident and CEO

Stephen BariteauVice President, Development

Maureen ManierVice President, Communications, Marketing and Donor Engagement

Vicki Mech HesterChief Strategy Officer and Vice President,Human Resources

David SchapkerVice President, Finance and Administration, CFO

Greg WilliamsonVice President, Regional Development

EditorLisa Dudeck

Associate EditorJason Mueller

Art DirectorDavid Birke

Contributing WritersNancy AlexanderElizabeth Jacques

Photography

David JaynesLinda Tipton

Gratefully,

Kevin O’KeefePresident and CEORiley Children’s Foundation

T H E F I N A L W O R D

Connect with uson Facebookfacebook.com/rileykids

2009 Riley Champion Tatum Parker and Jeff Gordon

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