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What’s Inside Caleb Kinnaird New Castle

Pg. 5-8, Cover Story: Wholehearted Happiness Pg. 3-4

Step by Step How Riley solved a medical mystery and helped a boy run again Pg. 9

In the News

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Pacers star Paul George teams up with Riley

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Voices of Riley Riley research is changing lives by attacking type 1 diabetes Pg. 13

Put the Wagon on Your Wheels A Riley family’s call to action

Back Cover

Why We Give A grandson inspires a gift from the heart

We welcome your story suggestions. email ideas to g Please tshepherd@rileykids.org.

Good Sports How Riley gets injured athletes back in the game

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very fall football stadiums throughout Indiana glow under Friday night lights. Last August 23 in Indianapolis, Steven Bailey was returning a kickoff for his visiting Edinburgh High School Lancers when three Emmerich Manual High School opponents brought him down. The 16-year-old running back started playing football at age 7, so his parents Harvey and Susan Bailey had seen plenty Edinburgh H.S. athlete Steven Bailey (left) was of tackles. airlifted to Riley after an injury during this game “It was a clean hit,” Harvey says. “Nothing out of the ordinary. He was slow to get up, but he walked off the field.” But when Steven rolled off the bench in pain, a trainer urged his parents to take him to an emergency room. From Franciscan St. Francis Health–Indianapolis, Steven was airlifted to Riley Hospital with a torn kidney, shattered spleen and lung injury. Riley is home to Indiana’s only Level I pediatric trauma center. Riley pediatric surgeon Johanna Askegard-Giesmann, M.D., was on call when Steven arrived. “Any time a child comes into the emergency room with traumatic injuries, our trauma system is activated,” she says. “This was a higher level of trauma activation, so the entire team was aware of him.” Steven stayed at Riley for seven days. “We observe these patients with continuous monitoring, especially the first 12 to 24 hours in the ICU,” Dr. Askegard-Giesmann says. “Basically the body clots the injury, and they’re stable.” The highlight of Steven’s stay was a visit from Colts quarterback Andrew Luck, who gave him an autographed football and poster that’s now housed in a display case on his dresser. Steven was able to rejoin his team for the last game of the year on November 1. He and his family are grateful for the medical team that made


Did you know? Researchers on the IU/Riley campus will study Indiana high school athletes to learn about concussions through the GE/NFL “Head Health Challenge” program.

School in Edinburgh, Ind. “He’s the happiest kid,” says his mother Lisa Roberts. “I can’t even discipline him half the time because he acts silly and gets me laughing so hard.” But Lisa wasn’t laughing last July when Joshua was flipped off his Ripstik—a two-wheeled skateboard that carves back and forth much like a snowboard. He was riding at a friend’s house when he fell; his head Joshua Roberts, Edinburgh hit the side of a parked van and then concrete. When his friend’s mother picked him up, Joshua was disoriented and bleeding from his ear. Panic-stricken, she drove him home. Lisa immediately called 911. Her son was taken by ambulance to Johnson Memorial Hospital, where doctors recommended his transfer to Indianapolis for treatment of his head injury. Steven Bailey, Edinburgh Lisa chose Riley Hospital without skipping a beat. Joshua spent two days there under observation for a concussion. “He was loving it there,” his mother says. “He liked being waited that milestone possible. “Riley makes you feel really welon and cutting up with the nurses.” But there’s a serious come,” says Susan. “The staff and doctors are awesome!” lesson in her son’s accident, which has led to a new rule that’s From concussions to foot injuries and everything in strictly enforced in the Roberts household: No helmet and between, Riley physicians cover a multitude of sports safety equipment, no Ripstik—no exceptions. medicine specialties. “If a child is old enough to participate in Lisa and other parents know that accidents still happen, sports, they’re old enough to get injured,” says Riley pediatric sometimes despite such precautions. When young athletes orthopedic surgeon George Gantsoudes, M.D. “We cover just need care, Lisa says Riley Hospital is the place to go. “Like about anything that can possibly happen to a child, with I told the ambulance, ‘You’re going to Riley!’ I think they’re access to specialists who have the most advanced training on awesome.” injuries.” That includes the most frightening ones. Joshua Roberts, 13, is an active eighth-grader at Tabernacle Christian

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“We’ve come a long way from crawling around the house to walking to running.”

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- Jennifer Wilson Huntertown, Ind.

John Paul Wilson, Huntertown, with Dr. Randall Loder

“Riley gives us hope that our son can do what others can do.” - Jennifer Wilson

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truth about John Paul’s diagnosis: tethered cord—a condition where the spinal cord is abnormally attached to tissues around the spine—was the source of his leg problems. “Collaboration with his other doctors was the only way we were able to figure out what was going on and correctly diagnose him,” explains Dr. Loder. “That’s the great thing about Riley: doctors are able to put their brains together to help the patients.” Over the next month, John Paul began walking again. His left foot began to straighten and his right foot also showed some improvement. The biggest change was the development of John Paul’s calf muscles, which had been virtually non-existent before the surgery. “The care we received at Riley was John Paul Wilson, Huntertown unbelievable,” says Jennifer. “From the nurses to the doctors to the Child Life specialists, it didn’t even feel like we were in a hospital.” John Paul began experiencing pain again in September and Dr. Loder lengthened his Achilles for a third time and removed the bone from John Paul’s growth plate. Within a few weeks, John Paul was out of the cast and going to physical therapy. In January, for the first time in his life, he ran without pain. “We’ve come a long way from crawling around the house to walking to running,” Jennifer said. “Our doctors were in constant communication with one another—I’ve never experienced a team effort like that. They listened to every detail to pinpoint what might be going on.” The Wilsons are committed to giving back to Riley, and Jennifer now serves on the Northeast Indiana Riley Leadership Committee. “Riley gives us hope that our son can do what others can do,” says Jennifer. “We’ve never had ‘no’ in our vocabulary, but Riley has made it so we don’t have to say ‘no.’”

How Riley solved a medical mystery

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n the day John Paul Wilson was born, his parents Jennifer and Steve Wilson noticed his tiny feet were turned inward, the right more severely than the left. Within weeks, John Paul was diagnosed with bilateral club feet. It took nearly eight years and the staff at Riley Hospital for the Fort Wayne area family to discover the shocking truth: John Paul’s diagnosis was wrong. For the first seven years of John Paul’s life, the Wilsons traveled every few weeks to a hospital several states away that is known for the development of a successful non-surgical club foot technique. John Paul wore more than 50 casts, underwent two Achilles-lengthening procedures and had a tendon transfer for both of his feet. In the summer of 2012 John Paul started experiencing severe pain. It became so intense, he was unable to walk. His doctors wanted to try a series of 10 casts, meaning the Wilsons would have to travel hundreds of miles every two weeks. The Wilsons decided it was time to find doctors closer to home. In February 2013 the Wilsons were referred to Dr. Randall Loder, Chairman of Orthopaedic Surgery at Riley Hospital for Children. “His compassion and attention to detail made me feel like he was going to figure out what was wrong,” Jennifer said. Through a series of MRIs and CT scans, Dr. Loder discovered an extra bone on John Paul’s growth plate. The extra bone was causing John Paul pain and was keeping his foot from growing. Dr. Loder wasn’t convinced, however, that John Paul had club feet and worked with Riley neurosurgeon Dr. Laurie Ackerman to consider the whole picture. Then last summer, John Paul began falling. The new development prompted Dr. Ackerman to perform exploratory surgery. That’s how she discovered a small tether on John Paul’s spinal cord—one so small it couldn’t be seen on an MRI. After nearly eight years of treatment, the Wilsons finally learned the

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Caleb Kinnaird wore his Batman costume and a big grin as he happily munched Batman cupcakes at his thirdbirthday party at home in New Castle, Ind., in late January. Birthday celebrations aren’t taken for granted at the Kinnaird house because Caleb holds a record no parent would envy:

His 321 days at Riley Hospital mark the longest period that any Indiana child has spent waiting in the hospital for a heart transplant. Back in September 2010, Daniel and Katie Kinnaird were also waiting—excited to find out the gender of their second child at a routine 20-week ultrasound. Instead, they learned their son had tricuspid atresia, a serious heart valve defect. Eight days after Caleb’s birth on January 27, 2011, he underwent heart surgery. After a second surgery at seven months, he did fairly well for about a year. “We thought he was on track to have a relatively normal life,” Katie recalls.

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Instead, Caleb’s heart began to fail. His physician called Riley pediatric cardiologist Randall Caldwell, M.D., and suggested that Caleb would be a candidate for a heart transplant. The very sick toddler, who had already suffered an episode of cardiac arrest, arrived at Riley Hospital on November 1, 2012. “We thought he would get a heart and we would be home by Christmas,” his mother recalls.

and that’s a huge reason Caleb did so well. The staff just took such good care of us. We created a normalcy that we couldn’t have done otherwise.” Transplant coordinator Debbie Murphy says she admired the Kinnairds’ ability to live day to day. “They became a part of the culture of the unit,” she says. “They did the wait with such grace and compassion for other people. They saw other families have their transplant experience and leave the hospital, and they were genuinely happy for them.” Caleb’s turn didn’t come for nearly eleven months. Then, on September 25, 2013, Mark Turrentine, M.D. procured a heart from a matching donor, and Mark Rodefeld, M.D. implanted it into Caleb’s chest.

Caleb went home, finally, on October 15, 2013. It didn’t take him long to become as rambunctious as his 5-year-old brother and best buddy Jonah. The two parry with Star Wars light sabers and love dressing up in their astronaut or superhero costumes. “We have Spiderman, Superman, Batman…” their mother says. “There’s always a hero running around our house.” Doctors don’t use the word “miracle,” Katie says, but she does. She and Daniel credit their strong faith for helping sustain them during Caleb and his fellow superhero, big brother Jonah

Left: One-week old Caleb recovering from his first heart surgery Right: Caleb spent so much of his life at Riley he had no memory of his home

Caleb, however, had several things working against him, Dr. Caldwell explains. His Type O blood meant he could receive a heart only from a Type O donor. “With his previous surgeries, he also became sensitized to different blood products, which limited the pool even further because of his sensitivity to certain antibodies,” the cardiologist explains. “And we had to have a donor of appropriate size.” The family’s hopes soared, then were dashed, when a potential donor heart that became available in February proved unsuitable for Caleb. As weeks stretched into months, the Kinnairds moved into an apartment at the Ronald McDonald House. “I’ll be a Riley cheerleader the rest of my life, and I’ll be a Ronald McDonald House cheerleader, too,” Katie says. “It allowed us to keep our family together,

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After the transplant, the first thing his parents noticed was that Caleb wasn’t blue anymore. “He was asleep,” Katie recalls. “He had pink lips and pink cheeks, and I couldn’t take my eyes off him.” “The last thing the surgeon said as we stood to go give the news to our parents was, ‘You have a completely new little boy on your hands.’ I can’t imagine hearing more beautiful words,” Katie wrote in her journal.

Caleb’s stay at Riley Hospital. “We’ve had many doctors tell us that it’s incredibly unlikely that a child as sick as Caleb should have been able to wait 11 months. But he never got an infection, never had a runny nose, never got sick. His heart function didn’t decrease. All circumstances allowed him to wait. And when he got a heart, it was the perfect one for him. He beat the odds.” The odds were against Caleb, Dr. Caldwell concurs. The sad truth is that children waiting so long for a heart transplant, despite any hospital’s best efforts to support them, usually do not


Far Left: The Kinnaird family celebrates Halloween Left: Caleb with some of his favorite nurses, Christine Shehorn, Rebecca Shoemaker and Mallory Schafer

survive. In “This case Caleb’s case, is a perfect “I really example of credit the the complete nurses, even dedication Indiana’s first infant more than the that the Riley physicians,” heart transplant was team has to the Dr. Caldwell family on two performed at adds. “It took levels: the cliniRiley Hospital in 1989. hard work cal outcome as on the nurses’ well as caring part to keep him for the family, doing well for so showing them long.” incredible levels of “There are a handful of nurses who support, almost taking them in as part became like our family,” Katie says. of our own family. I would say the best “Riley felt like my other home. And it thing about Caleb’s family, in return, still feels like that when we go back. I was the incredible way that they think of Caleb’s room there; if I close reached out to other families to show my eyes, I can see the pictures we hung their support and encouragement. on his walls, the stuffed animals in his Twelve days after Caleb went home bed. It will always be a positive place.” with his parents and brother, a new Through Katie’s blog “Caleb’s little sister named Lucy arrived. “She Heart,” thousands of people around really was the cherry on top,” Katie the world followed Caleb’s story. One says. who was closer to home was Riley Other than reducing Caleb’s Hospital President and CEO Jeff exposure to germs, Daniel and Katie Sperring. Dr. Sperring had previously look forward to a normal life with practiced in the Kinnairds’ hometown their three children. Dr. Caldwell of New Castle, and heard about them expects to see Caleb every two months from friends when Caleb was first on an ongoing basis, with occasional admitted to Riley. “I got a chance to biopsies to look for any signs that know them very early when they first Caleb’s body might be rejecting his came to the hospital,” Dr. Sperring new heart. says. The Kinnaird family began a new

Did you know?

tradition in December. During the first big snowstorm all five got bundled up for a walk in the snow after dark, followed by Christmas music and hot chocolate. “Caleb had never played in the snow,” Katie says. “The boys were laughing. This was what we were so desperate to see, Caleb being well enough to do that.” And, when the Kinnairds recently received a clear biopsy report, Katie picked Jonah up from school and Daniel came home on his lunch hour. Then they cranked up some music and danced, Caleb rocking out most of all. “We are silly people,” Katie says. “We’re joyful and thankful.”

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In the News Paul George Stars in Riley PSAs

Kohl’s Caring for Our Kids’ PSAs feature Riley Kids Paige Rawl and Matt Goodsman, Dr. Roberta Hibbard, and Paul George

Pacers player Paul George has teamed up with Riley Hospital as the spokesperson for the Kohl’s Caring for Our Kids Campaign. Kohl’s Department Stores, through the Kohl’s Cares® cause merchandise program, has donated nearly $300,000 to Riley Hospital for Children to provide ongoing support for Kohl’s Caring for Our Kids. The Riley Children’s Foundation program focuses on preventing child abuse and neglect and promoting positive parenting skills. Paul George is featured in public service announcements with Riley kids Matt Goodsman and Paige Rawl and Dr. Roberta Hibbard, the director of child protection programs at Riley Hospital. The ads, which are airing across Central Indiana, include advice on positive parenting, bullying prevention and how to report suspected abuse or neglect. “Kohl’s Caring for Our Kids serves a vital role in the best interest of children,” said Dr. Hibbard. “To prevent child abuse and neglect, we must expose its terrible truths. It hits close to home for all of us, whether we’re aware of it or not. Together, we can reduce the number of children who suffer due to abuse, neglect or accidental injury.”

OF NOTE

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Michael L. Smith, retired from Anthem, Inc. and its subsidiaries, Anthem Blue Cross and Blue Shield as Executive Vice President and Michael L. Smith Chief Financial Officer (CFO), has been elected to serve on the Riley Children’s Foundation Board of Governors.

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Camp Riley applications are available at RileyKids.org/Camp. Approximately 70 percent of Camp Riley campers have been patients at Riley Hospital, but any child age 8-18 with a physical disability is welcome to apply to camp. No child is ever turned away from Camp Riley due to inability to pay.

First Lady Karen Pence announced the formation of the Indiana First Lady’s Charitable Foundation in November. The Foundation’s mission is to support and recognize communities and organizations that promote the well-being of Hoosier children and their families. The inaugural grant recipient will be Riley Hospital for Children’s Art Therapy Initiative.

The Legends Championship, an official LPGA Legends Tour event held August 13-17 in French Lick, Ind., will support Riley Children’s Foundation with a minimum donation of $50,000. Sponsorship packages directly benefiting Riley Children’s Foundation are available. Contact Joe Vezzoso, vice president of resort operations at French Lick Resort, at jvezzoso@frenchlick.com.

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Robyn Fuchs, Ph.D., of the Department of Physical Therapy, IU School of Health and Rehabilitation Science, and Linda DiMeglio, M.D., of the Department of Pediatrics, IU School of Medicine, received $72,445 through a grant to support their project titled, “The Effect of Botox on Bone Health in Children with Cerebral Palsy.”


Riley Highlights Riley story unfolds in Denver Aquarium Three Camp Riley campers and their “dive buddies” proved their strength and determination. 17-year-old Matt Goodsman from Indianapolis, 15-yearold Parker Timberman from Brazil and 16-year-old Grace Reichenbach from Fort Wayne completed Emalee and Grace Reichenbach, Fort Wayne scuba certification training in Denver in January. The campers’ dive buddies the cost for the introduction to diving were essential partners in their day for Camp Riley campers and the journey. Parker’s dad Terrill, Matt’s certification trips for three years. dad Mark and Grace’s sister Emalee Riley Children’s Foundation also also became scuba certified. The scuba partnered with the Cody Unser First trip was made possible by Epsilon Step Foundation and A-1 Scuba in Sigma Alpha. ESA has underwritten Littleton, Colo.

Heartfelt Fundraiser Honors Brother’s Memory

benefiting Riley Hospital

May 31-June 1 MiracleRide.net

How can I help Riley?

Make a gift in honor of a special child or caregiver at RileyKids.org

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Share your Riley story (RileyKids.org/stories)

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Switch to Riley license plates (RileyKids.org/licenseplates)

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Ten-year-old Katie Casavan and her friend, Maddie Moore, found a beautiful way to honor the memory of Katie’s younger brother. The girls began selling rainbow loom bracelets for Riley Children’s Foundation after Cooper passed away from mitochondrial disease. They sold 500 bracelets within three weeks. The girls continued their “Letz Make a Rainbow” fundraiser by selling $5 bracelets customized with college basketball team names and colors. They reached their goal to raise $2,000 to dedicate two red wagons at Riley Hospital in Cooper’s name.

Register for the 21st annual Miracle Ride

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Visit RileyKids.org/blog

VOICES of RILEY Highway to Hope by: Michelle Eiden In the past two years, my son Zach and I have made 31 trips and spent more than 180 hours traveling between our home in suburban Chicago and Indianapolis. Every moment has been worth it because a clinical trial at Riley offered something we couldn’t find Michelle Eiden anywhere in our area: hope. Riley Parent The beginning of Zach’s freshman year of high school was plagued with trips to the doctor, checking for strep, sinus infections and even mononucleosis. He had been practicing for football all summer and had lost weight and built muscle, but, on the day of his diagnosis, I saw him with his shirt off and was shocked by how skinny he looked. I made him get on the scale and he weighed just 99 pounds—31 pounds less than he had weighed just two weeks earlier. I ran downstairs immediately and called our doctor. In the emergency room, my husband Jim and I learned that Zach was in diabetic ketoacidosis, a life-threatening condition brought on by type 1 diabetes. Without insulin to break down his blood sugar, Zach’s body was burning fat as a fuel and spilling toxic acid into his bloodstream. Untreated, this could have led to a coma or even death. After Zach was stabilized in our local hospital intensive care unit, our family began coming to grips with the new reality of blood sugar testing, insulin injections and tracking every bite of food. (It felt like we had a newborn again, with round-the-clock monitoring.) Of course, there are plenty of endocrinologists who treat type 1 diabetes in the Chicago area. But no hospitals in our area offer clinical trials testing medications that may help newly-diagnosed patients like Zach. Through a new friend who reached out to us upon hearing about Zach’s diagnosis (her son had been diagnosed one year earlier) we heard Riley physicians were the leaders of a nationwide, multi-center trial testing a drug called alefacept which appears to stop the progression of diabetes. We decided all the hours spent driving up and down I-65 would be well worth it. We knew that Zach might not benefit from the drug, or that he might be randomly assigned to the group that received a placebo. Still, Zach wanted to be a part of the

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Zach Eiden, Bolingbrook, Ill., hiking at the Grand Canyon

scientific process of finding a cure. Our family’s hope is that studies like this will help children—maybe even Zach’s children—live their lives free from the burdens of diabetes. Today, Zach’s participation in the trial is complete. We are happy to report his pancreas is still working two-and-a-half years after his diagnosis, and his average glucose level is in a healthy range. We are excited to learn what conclusions the Riley physicians have made. We have made our own, less-scientific discoveries during Zach’s journey with diabetes: The two years of travel were well worth it, regardless of the results. The doctors and nurses at Riley were angels during those challenging first two years. The weekly monitoring and support Zach received were invaluable. These doctors and nurses have such passion for helping these kids and trying to find a cure. We feel blessed to have met such wonderful people at Riley. We wish the best to the research team. We are ready for the next study.


Promising Diabetes Results by: Mark Rigby, M.D., Ph.D. I will probably never forget the moment I first saw clear evidence of promising results from the T1DAL trial. Our trial was the first of its kind, testing a drug normally used for psoriasis on type 1 diabetes patients. During a Mark Rigby, M.D., Ph.D. conference call with the other hospitals involved in the study, I Riley Immunologist and saw a graph of the participants’ Researcher insulin production pop up on my screen. I think I gave a big “Yes!” out loud with a fist pump. This was a trial I conceived of more than 6 years ago and have been working on ever since. We knew that T-cells, which usually fight infection, appear to be very involved in attacking beta cells when people develop type 1 diabetes. Alefacept is a drug that attacks highly active T-cells, and the FDA approved it for use on patients with the autoimmune skin disease known as psoriasis. We wondered: if this drug can attack T-cells and quiet down the process of skin cell destruction, could it also help quiet down beta cell destruction we see with type 1 diabetes? I presented this trial plan to the Immune Tolerance Network of the National Institutes of Health (NIH), and ultimately received funding to begin the work. I was asked to be the national Protocol Chair and Principal Investigator of this study which included over 15 sites around the country. Three years ago, we began enrolling newlydiagnosed type 1 diabetes patients through about a dozen hospitals across the nation. Those participants, including Zach Eiden, were randomly assigned to receive either 24 doses of alefacept via weekly shots, or placebos. After the first year was complete, we found that patients on the drug were making significantly more of their own insulin and having fewer hypoglycemic episodes. These results were presented at a number of international meetings and published in December in the journal Lancet Diabetes and Endocrinology. Many experts in the field have suggested this is likely one of the more promising leads toward finding a cure to type 1 diabetes. We are working on the final results of the study, hoping to launch a larger trial involving more patients. It is wonderful to see progress in this field of diabetes, in which I have worked for 20 years. But most of all, it is rewarding to see that there’s interest and hope from families like the Eidens who are willing to invest time, energy and emotion. Being able to provide them an opportunity to contribute to progress is simply fantastic.

Riley Families Fuel Discoveries by: Linda DiMeglio, M.D., M.P.H. Families who join our diabetes studies at Riley Hospital come to our research center for a variety of reasons. Some are curious about the research process and want to understand how it works Linda DiMeglio, M.D., M.P.H. from the inside. Some hope Riley Endocrinologist and that the trial will benefit Researcher their child directly in their journey with diabetes. And sometimes, even when people know that a particular trial is unlikely to help them personally with their disease, they participate simply because they want to help others in the future. When I see this altruistic perspective in a child, I cannot help but be moved. I served as the principal Riley endocrinologist for the multi-center T1DAL trial testing the drug alefacept in people with newly-diagnosed type 1 diabetes. I made it a priority to learn about the reasons that drew each family into our study. It was my duty to make sure they fully understood what the study involved and that they felt comfortable with the commitment. Working with families like the Eidens is one of the most rewarding parts of my job. I appreciated their flexibility, their willingness to travel so frequently to Indianapolis from Chicago, and, especially, their passionate commitment to the research process. In return for their efforts, I promised Zach the enhanced diabetes care and monitoring that come along with trial participation, and a safe and well-monitored study involving a promising novel drug. Given today’s uncertain research funding environment, we are deeply appreciative of donors who support our work. At Riley Hospital we have a top-notch research operation. Our clinical diabetes research team partners with the basic science research teams in Dr. Raghu Mirmira’s lab in the Wells Center for Pediatric Research. We have so many great ideas, but they require funds to get off the ground. Donors through Riley Children’s Foundation have been an essential part of maintaining our research staff and conducting local pilot studies which have led to larger studies and more knowledge. My husband and I have enrolled each of our own three children in research studies because, like the Eidens, we believe in our family being a part of the scientific discovery process. My great hope is that our patience and perseverance will form stepping stones to a healthier future for children everywhere.

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Put the Wagon on Your Wheels How do you thank someone who saved your child’s life? Jason and Melissa Eager of Fort Wayne say no words feel adequate. “We owe so much to the folks at Riley Hospital who cared for our daughter Sophia, from oncologists to surgeons to nurses,” says Jason. “There’s nothing we can ever do to repay the people who helped save her life.” Sophia was 4 years old when she began treatment for Wilms’ tumors through the Riley Cancer Center. Today, she is 10 years old and cancer-free. Since the Eagers can’t capture their gratitude in words, they look for actions they can take to help Riley. Putting red wagon license plates on both of their cars felt like an obvious and important step. “Getting the Riley plates and supporting the hospital in that manner is a small thing we can do to help generate a buzz,” says Jason. “It’s an easy way to make a donation, and seeing the plates on the road helps keep Riley relevant and fresh in people’s minds.” $25 from each Riley license plate sale goes directly to meet the most urgent needs at Riley Hospital. Those ever-evolving needs include support for services not typically covered by insurance such as Child Life and Social Work. Currently, about 16,000 Riley plates are on the roads, generating close to $400,000 in unrestricted funding for the hospital each year. Riley Childen’s Foundation’s goal is to have 20,000 plates on Indiana roads by 2015. You can change to a Riley plate at “To reach the goal of any time at your BMV branch 20,000 Riley plates would be (even if your plate isn’t up for renewal) tremendous,” says Jason. “It’s good to see that support $25 from each Riley plate sale goes to for Riley all over the state. support Riley Hospital The hospital is such a tremendous resource. You Riley motorcycle and RV license don’t realize how important it is until your child needs it.” plates are also available

Did you know?

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Sophia Eager Fort Wayne


Remembering Henry: A Family’s Inspiring Gift

Final Word

Associate Editor Jason Mueller

Friday, January 17, 2014 was an important day for Riley parents Maggie and Henry Scroope IV. The Scroope family from South Bend, and extended family members from New York and Connecticut, along with Riley Hospital physicians and nurses, gathered at the new Riley Hospital Pediatric Intensive Care Unit (PICU). The purpose of the gathering was to celebrate and honor the memory of baby Henry Scroope V. Among the family members present that day was Father Monk Malloy, baby Henry’s godfather and great-uncle, President Emeritus of the University of Notre Dame and a member of Riley Children’s Foundation’s Board of Governors. Henry had a profound impact on the people who knew him during his four months on earth. Little Henry, as the family often refers to him, struggled with complicated heart and lung issues from birth. Henry’s parents thanked the Maggie and Henry Scroope IV, South Bend, physicians and nurses for doing all that they could to give the family extended time with with their children, Morgan and Sean their son. Amid tears, nurses and physicians who cared for baby Henry shared their memories of him and their interaction with him and his family. Father Malloy then led the family and Riley colleagues in a dedication and blessing of a PICU patient room in the Simon Family Tower. This room will bear Henry Scroope’s name and will be a place where other children will receive top-notch care at the hands of Riley doctors and nurses. In Henry’s short life, he gave and received a love that can only be shared by parents, family and a baby; he encouraged doctors, nurses and technicians to give their very best efforts for him—and to learn from him how to care for other babies who will need them; and he inspired his mom, dad and his entire family to help other children in his honor. On Friday, January 17, 2014, we gathered with the Scroope family to honor and remember their son, Little Henry, and also to thank them for raising $150,000 for Riley Hospital. Little Henry and his family serve as examples to all: to rise above adversity, challenge and loss and to do good to benefit others. We are grateful to the extended Scroope Family and to baby Henry, who will forever be remembered as a member of his and the Riley family.

Art Director David Birke

Gratefully,

Riley Messenger Spring 2014 Dedicated to friends and partners of Riley Children’s Foundation Riley Children’s Foundation 30 S. Meridian St., Suite 200 Indianapolis, IN 46204-3509 RileyKids.org Email: riley@RileyKids.org Jim Morris Chairman, Board of Governors Kevin O’Keefe President and Chief Executive Officer Robin G. Bellinger Chief Development Officer Maureen Manier Chief Communications Officer Vicki Mech Hester Chief Strategy Officer David Schapker Chief Financial Officer

Editor Trisha Shepherd

Contributing Writers Nancy Alexander Kate Burnett Photography Esther Boston Dave Jaynes Brian Powell

Kevin O’Keefe President and CEO Riley Children’s Foundation

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Why We Give

OUR RILEY STORY When Mark Burris best chance of survival thinks of the word “hero,” would be to undergo a his mind immediately series of three risky opengoes to one place: Riley heart surgeries before his Hospital for Children. third birthday. “People tend to make Thanks to the skills of professional athletes out world-renowned Riley to be God-like heroes,” says heart surgeons John Burris, who is president of Brown, M.D., and Mark Rudd Equipment Company Austin Burris, Evansville Turrentine, M.D., the in Louisville. “It’s one surgeries were a success. thing to admire someone for hitting a Austin, now a thriving 13-year-old, can golf ball, but it’s another thing to admire swim and ride his bike like his friends. someone for working on a baby’s heart Mark and Dana met with Dr. Turthe size of a strawberry.” rentine late in 2013 to find out how they Mark and his wife Dana first met could make a difference for other heart their Riley heroes in November 2000 patients. They ultimately decided to after their oldest grandson, Austin, establish The Burris Family Fund for was born at Deaconess Hospital in Excellence, which will support a new Evansville. Austin was having heart cardiac mechanical assist device program trouble and was rushed by ambulance at Riley. The equipment lets a child’s to Riley Hospital. At Riley, doctors heart rest until receiving further discovered he had a serious defect called treatment or a heart transplant. “If we hypoplastic left heart syndrome. Austin’s can change one life, then it’s worth every

Contact Trisha Shepherd to share your Riley Story, tshepherd@rileykids.org

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penny,” says Mark. Although there are many deserving charities, Dana says her family focuses their philanthropic giving on Riley for one simple reason: “They gave us the best gift, and that’s Austin.”

Riley Children’s Foundation

M a ke a G i ft

Robin Bellinger, Riley Children’s Foundation Chief Development Officer: By making a gift to Riley you can offer help and hope to kids who need it most. Please contact me at 317.634.4474 or rgbellinger@rileykids.org to explore the many ways to give.


Spring 2014 Riley Messenger  

Riley Children's Foundation magazine

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