THE MAGAZINE OF ARKANSAS CHILDREN’S HOSPITAL FOUNDATION | JULY/AUGUST 2015
NEW HEART, NEW LIFE YOUR GIFTS HELPED MAKE CHRISTOPHER BETTER
CARE, LOVE AND HOPE AT SCHOOL YOU CAN HELP MAKE
SCHOOL KIDS HEALTHIER TOMORROW
musical miracles
YOUR SUPPORT BRINGS SMILES TO SICK KIDS
®
UNTIL NO CHILD NEEDS US, WE NEED YOU.
Thank You for Championing Children At Arkansas Children’s Hospital, we champion children every day by making them better today and healthier tomorrow. That’s our promise to the families of Arkansas and beyond. You help us fulfill that promise every day. In this edition of ACHiever, you’ll learn about the impact your gifts have on children all over this state and region. Your generous support is what allows us to care for premature lungs, mend broken bones, repair damaged hearts and shrink cancerous tumors. Your gifts help scientists find cures and preventions for childhood diseases. With your help, Arkansas Children’s Hospital reaches all four corners of this state, with the Angel One helicopters, injury prevention programs and specialty clinics providing care closer to home for families in northeast and northwest Arkansas. But together, we can do so much more. Over the next few months, you’ll start hearing more about our promise to the families of Arkansas and the impact your gifts can have on helping us keep that promise. It’s a promise to expand our focus beyond just making sick and injured children better to giving all children in Arkansas a healthier tomorrow. It’s a promise to offer easier access to pediatric care to ensure the kids of Arkansas get care when and where they need it most. Now more than ever, until no child needs Arkansas Children’s Hospital to make them better or to keep them healthy … we need you! Thank you for all you’ve done so far for the children of this state.
Marcy Doderer, FACHE President and CEO Arkansas Children’s Hospital
ACHIEVER STAFF: Editor Jennifer Cobb Pyron Contributing Writers Ashley Leopoulos, Becky McCauley Project Manager Tona Jolly Design Waynette Traub Ad Design Diana Denning Photographers Keith Branch, Zoie Clift, Kelley Cooper, Wesley Hitt 2
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Arkansas Children’s Hospital Board of Chair Vice Chair Secretary Treasurer Chief of Staff Past Chair President and CEO John Bale, Jr. Sharon Bale Ron Clark Jayant K. Deshpande, MD Haskell Dickinson Harry C. Erwin, III Jeff Gardner Sharilyn Gasaway Melissa Graham, MD Paul Hart Marion A. Humphrey Richard Jacobs, MD Phillip Jett Chris Kemp Holly Marr
Directors Tom Baxter Mark Saviers Skip Rutherford Mark McCaslin Rick Jackson, MD Dorsey Jackson Marcy Doderer, FACHE Mark McCaslin Pat McClelland Barbara Moore Beverly A. Morrow Jeffery Nolan Mary Spears Polk Daniel Rahn, MD James "Skip" Rutherford Patrick Schueck Charles B. Whiteside, III Emeritus Directors Hillary Clinton Robert G. Cress Anne A. Hickman
Arkansas Children’s Hospital Foundation Board of Directors Chair Marcy Doderer, FACHE Vice Chair Charles B. Whiteside, III President Fred Scarborough, CFRE Myrna Adams Pat Allen Ritter Arnold Sharon Bale Ginger Blackmon Frances Buchanan Jeremy Cobb Steve Davison Harry C. Erwin, III Hayden Franks, MD Sharilyn Gasaway Robin George Mike Gibson Sonja Yates Hubbard Jason LaFrance Sharon Lamb Mark Larsen Jim McClelland Barbara Moore
Cindy Murphy Jake Nabholz Marshall Ney Robert Porter, MD Terry Quinn Kellie Robinson Jennifer Schueck Patrick Schueck Belinda Shults Jennifer Smith Claudia Strange Celia Swanson Tom Womack Emeritus Directors Robert G. Cress Don Edmondson Henry Rogers, MD
Arkansas Children’s Hospital Research Institute Board of Directors Chair Ron Clark Treasurer Ross Whipple President Gregory L. Kearns, PharmD, PhD, FAAP John Ahlen, MD Marcy Doderer, FACHE Dee Ann English Ellen Gray Richard F. Jacobs, MD Mark Millsap Jeff Nolan
Kathy Bennett Perkins Robert Porter, MD Daniel Rahn, MD Jose Romero, MD Mark Saviers Kartik Shankar, MD
MUSICAL MIRACLES
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Thanks to you, ACH has a brand new musical therapy program.
In this ACHiever
KELLEY COOPER
4 | New Heart, New Life Your gifts helped make Christopher better.
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6 | Care, Love and Hope Go to School You can help make kids healthier tomorrow in the place they spend most of their time: school.
9 | Healthy Hayden Because of you, an emergency flight on an Angel One helicopter lead to quick diagnosis and life-saving treatment.
12 | The Miracle of Music Your generous investment brings the state's first music therapy program to ACH.
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15 | Why We Give Grateful grandparents Kirk and Cynthia Dupps say “thank you” to ACH with a gift in honor of their grandson Jimi. COVER: Certified Music Therapist Andrew Ghrayeb plays guitar with Kylee, a young patient with Cystic Fibrosis. Photography by Kelley Cooper.
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new
New Heart,
life
Your gifts helped make Christopher better BY ASHLEY LEOPOULOS
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ive-year-old Christopher Schroeder is a vibrant, energetic child. Whether he’s pulling his treasured collection of stuffed octopi in a little red wagon or shooting three pointers on his Fisher Price basketball goal, he’s always on the go. It’s hard to imagine how sick he was when he was born. In a routine prenatal checkup Shannon Schroeder was told her unborn son had a very serious heart condition. It was a scary diagnosis. Although they were living in Portland, Oregon, at the time, Shannon and her husband Chris sought a second opinion at Arkansas Children’s Hospital. Doctors at ACH confirmed the diagnosis and determined a treatment plan. When Shannon delivered Christopher in Portland on November 30, 2009, his heart condition was much worse than previously determined. “Very quickly, we knew the treatment plan wasn’t going to work,” said George. “Our options on the West Coast were Seattle Children’s or Stanford, but we chose to go to ACH because he needed a new heart.” The Schroeders flew to Little Rock and nine-day-old Christopher was put on the transplant list at ACH. On January 16, 2010, he received the gift of a new heart. After the surgery, he was put on dialysis to help remove excess fluid from his body while he recovered. Unfortunately, his little body was slow to bounce back. Christopher's kidneys were not functioning properly, so he was put on round-the-clock dialysis.
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DID YOU KNOW?
You Can Help Give Kids Hope for New Hearts Arkansas Children's Hospital Cardiovascular Intensive Care Unit is nationally ranked by US News and World Report’s Best Children’s Hospital List. Performing nearly 20 heart transplants in 2014, ACH is dedicated to providing exceptional cardiac services to patients. With your help, ACH can expand our cardiac service lines to a wider population and provide top-tier cardiac care to the children of Arkansas and surrounding areas. To make a gift in support of the heart programs at ACH, use the enclosed envelope or call 1-800-880-7491.
"I’m sure many people thought Christopher would not leave the hospital alive, but Arkansas Children’s Hospital doesn’t give up on children." – George Schroeder, Christopher’s father
PHOTOGRAPHY BY WESLEY HITT
Christopher stayed at ACH for nine months. Shannon stayed with Christopher, and George travelled back and forth between Portland and Little Rock to manage his work schedule. According to George, it was an emotional, stressful time. “I’m sure many people thought Christopher would not leave the hospital alive,” he says.“But [ACH] doesn’t give up on children.” During those long months, Shannon and George were thankful to be surrounded by the caring and dedicated staff in the Cardiovascular Intensive Care Unit. “We loved Dr. Garcia. She was Christopher’s second Momma,” says Shannon. “She was right alongside me, cheering for Christopher’s recovery.” In August 2010, Christopher was strong enough to go home. Today, the Schroeder family is grateful for the gift of a new heart and a new life for Christopher. He’s now a healthy child and will start Kindergarten in 2016. “He loves reading the signs around town and spelling words on the refrigerator,” says George. “He’s a better reader than many kids his age.” Thanks to your support, 17 children received heart transplants last year. Your donations make it possible for ACH to continue to provide top-notch cardiac care for patients like Christopher. “There is heaviness upon you when your child is struggling for life, but the doctors and staff at ACH never gave up on Christopher. They fought to keep him alive,” says Shannon. “We love ACH and the people there. The doctors, nurses and the entire staff are top-notch.” WWW.GIVING.ARCHILDRENS.ORG • ACHIEVER • J U L Y / A U G U S T 2015
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Care, Love & Hope Go to School You can help give kids a healthier tomorrow
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BY ASHLEY LEOPOULOS
hanks to community partnerships and support from donors like you, Arkansas Children’s Hospital is making kids better today and healthier tomorrow in the one place they spend most of their time: school. Currently, there are 26 school-based clinics offering primary healthcare services in Arkansas schools. Franklin Elementary School in Little Rock has one of them. Students have access to health and wellness education, developmental screenings and routine treatment of minor injuries. Behavioral health services are also provided by three contracted behavioral agencies at the Franklin Behavioral Wellness Center.
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"Connecting these children and their families to medical care is one of our most important priorities." - ALLISON HESTER, APRN, MSN, CPNP
Kaneika Wren and daughter Jada stop in for a routine physical and a hearing test at the Franklin Elementary School Health Clinic. With your support, the team of community organizations leading this effort plans to expand these services to schools all over the state.
Anna Strong, Executive Director of Child Advocacy and Public Health for ACH, says, “ACH outreach programs target populations that are underserved and have need of health services or other resources that we can provide that they might not be getting elsewhere.” One third of the students at Franklin Elementary do not have primary care physicians. For children with chronic illnesses, the school-based clinic is a vital resource. Consider a child with asthma, for example. “Many children with asthma are not connected with or utilizing regular providers for vital medications,” says Allison Hester, Pediatric Nurse Practitioner for the Franklin Clinic. “Our clinic is able to identify these kids PHOTOGRAPHY BY ZOIE CLIFT
who don’t have asthma action plans, connect them with their health care providers for an up-to-date exam, and help them get the appropriate refills they need. These are valuable services for these families.” Franklin Elementary parent Kaneika Wren is thankful for the support and services provided by the school-based clinic. After her fourth-grade daughter Jada complained of stomach pain, Kaneika sought help from the school-based clinic. After a visit to the Franklin clinic and a follow up appointment at the ACH West clinic, Jada is doing well and has a primary care physician. CONTINUED ON PAGE 8
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BY THE NUMBERS
SCHOOL-BASED CLINICS
13 COMMUNITY PARTNERS 1. 2. 3. 4. 5.
ARKANSAS CHILDREN’S HOSPITAL ARKANSAS DEPARTMENT OF EDUCATION ARKANSAS DEPARTMENT OF HEALTH ARKANSAS HUNGER RELIEF ALLIANCE CENTERS FOR YOUTH AND FAMILIES
6. 7. 8. 9. 10. 11. 12. 13.
DAY SPRING LITTLE ROCK SCHOOL DISTRICT NEW BEGINNINGS RHEA DRUG THE POINTE UALR CHILDREN INTERNATIONAL UAMS WAKEFIELD FUTURE SMILES DENTAL CLINIC
132 STUDENTS EXAMINED
SINCE AUGUST 2014
320 STUDENTS AT FRANKLIN ELEMENTARY
4 8
PATIENTS SEEN PER DAY ON AVERAGE
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“They helped me better understand what was going on,” says Kaneika. “Being a single parent and Jada being my only child, the clinic is really helping me.” A five-year grant from the Arkansas Department of Health provided the funds needed to renovate the space, hire the clinic manager and pay for the infrastructure needed at Franklin Elementary. Gifts from donors like you support the Franklin Health Clinic’s day-to-day operations. “I think community relationships and support will be the key to long-term sustainability of the clinic,” says Dr. Eduardo Ochoa, Associate Professor of Pediatrics and Section Chief of Community Pediatrics at the University of Arkansas for Medical Sciences. “Connecting these children and their families to medical care is one of our most important priorities,” says Allison. “I hope at the end of the five years we will have increased significantly the number of students with primary care providers. I'm also hopeful that we will see increases in early and periodic screenings and that we will meet state immunization requirements by the start of every school year. Ultimately, we want to help families take control of their own health care decisions in order for the children to have a healthier future.”
With your help, Arkansas Children's Hospital can connect more children to the care they need to be better today and healthier tomorrow. To make a gift in support of school-based health clinics, use the envelope provided or call 1-800-880-7491.
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HEALTHY HAYDEN
Thanks to you, a toddler's emergency flight on board an Angel One helicopter lead to quick diagnosis and life-saving treatment By Ashley Leopoulos
PHOTOGRAPHY BY C. WAYNETTE TRAUB
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“Once you’ve needed [ACH], you realize the impact it has on the children of Arkansas. We are just so blessed to have this place in our state.” – Robin George, Hayden’s grandmother
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n election night in 2004, Julie Swope tried everything to comfort her restless two-year-old, Hayden. Changing more diapers than usual and her baby unable to keep anything down, Julie sensed something was wrong. The next day, Hayden’s pediatrician ran tests and encouraged Julie and her husband, Patrick, to take their son to the emergency room at Washington Regional in northwest Arkansas. There they monitored Hayden for days, trying to raise his fluids to a healthy level. “At this point, we thought he just had a bug,” says Julie. “I kept asking if they could give him anything for his stomach ache. Thank God they didn’t. They told me whatever it was, he needed to get it out of his system.” It wasn’t until Julie bathed her sick little boy in the bright white bathtub in their hospital room that she noticed his jaundiced skin. The doctors X-rayed Hayden’s stomach and performed additional tests. They determined Hayden had developed Hemolytic Uremic Syndrome (HUS) after coming in contact with a strain of E. coli.
With such a life-threatening diagnosis, the medical team in northwest Arkansas changed course. “They told us he needed to go to Arkansas Children’s Hospital immediately,” says Julie. “They had already called the Angel One helicopter. When you hear a medical helicopter is on the way to transport your child – that just hits you like a ton of bricks. I remember asking why he needed go to Little Rock. They said, ‘If he needs to go on dialysis, he needs to be at Arkansas Children’s Hospital.’” From their hospital window, Julie and Patrick watched Angel One land on the helipad to pick up their sick little boy. Calmly, the transport team entered the room, one team member quietly talking to Hayden, giving him a stuffed helicopter to play with while prepping him for the flight. The other transport members gathered around Patrick
Julie, Hayden and Patrick Swope know firsthand how important it is for families all over Arkansas to have quick access to the expert care provided at Arkansas Children’s Hospital.
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and Julie to learn the full story and to explain how they would transport Hayden safely to Arkansas Children’s Hospital. Once Hayden arrived at ACH, the nurses and doctors acted quickly to assess Hayden’s condition. After two blood transfusions, Hayden’s body began to heal and he was able to return home. “Most hospitals don’t even have one pediatric nephrologist on staff … ACH had three. And all three were super,” says Patrick. More than 10 years after his lifesaving flight on Angel One, Hayden is a healthy and active tween. He visits ACH for an annual checkup, but his focus is on school and fulfilling his dreams of playing tennis professionally.
Gary and Robin George, shown here surrounded by their grandchildren, are the chairs for this year's Color of Hope Gala benefitting ACH on August 7.
Color of Hope Gala Chairs Get Personal:
Why Robin and Gary George are passionate about ACH
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very year, the annual Will Golf 4 Kids tournament and Color of Hope Gala raise money for Arkansas Children’s Hospital. This year, the Color of Hope Gala is a personal mission for its chairs Robin and Gary George. In addition to being board members, volunteers and donors, they are grateful parents and grandparents of ACH patients. You see, Hayden Swope (see story at left) is Robin and Gary’s grandson. And in 1982, their son Charles was flown to ACH in heart failure at only two weeks old. The George family knows firsthand how important it is to have excellent pediatric healthcare close to home. That’s why they are so passionate about making sure Arkansas Children’s Hospital expands its reach to every corner of the state. “Every time we would take Charles for appointments at ACH, we’d tell him how lucky he is,” recalls Gary. “While PHOTOGRAPHY BY KEITH BRANCH
he did have a life-threatening problem, he’s been able to have a pretty normal life. So many children at ACH have such critical illnesses. Our experiences at ACH have been very emotional for me, obviously, but to see what other families have to face … it’s just unbelievable.” Thanks to your philanthropic support, ACH is receiving two new Angel One helicopters this year. They are a large part of the statewide system of care that brings pediatric care closer to every child in Arkansas. Now, more kids like Charles George and Hayden Swope have the chance to get better today and be healthier tomorrow. “It is important to have ACH here in our backyard,” says Robin. “You just don’t think about it until you need it. Once you’ve needed [ACH], you realize the impact it has on the children of Arkansas. We are just so blessed to have this place in our state.”
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Certified Music Therapist Andrew Ghrayeb plays guitar with Nicholas, who has severe austism. Kids often become more engaged in their medical care as a result of music therapy.
the
Miracle
of Music
Your support brings music therapy to ACH BY BECKY MCCAULEY
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usic can work miracles. And because of you, Arkansas Children’s Hospital (ACH) is able to offer these miracles to our patients for the very first time. These miracles are called “music therapy.” Because of generous donors like you, ACH was able to hire a fulltime music therapist, Andrew Ghrayeb, in December 2014. Your support is making such a difference for our patients and their families through this exciting new program. Andrew defines music therapy as “using music to achieve non-musical goals.” According to the American Music Therapy Association, the results of music therapy are numerous. It can help kids actually recover physically from an injury or illness, and it can also help with emotional problems. Kids often become more engaged in their medical care as a result of music therapy, and it can help reduce fear and anxiety about being in the 12
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hospital. Music therapy can even be used in place of anesthesia for certain minor procedures. For long-term patient whose parents often have to leave them for extended periods of time due to other responsibilities, Andrew often asks the child’s mother to write a poem. He then sets her words to music and records her singing to play for the child in her absence. The music helps stimulate these children and strengthens the bond between them and their moms. Music therapists are trained to understand how music affects the brain and other physiological functions. They are also trained to determine the best musical treatment based on a child’s needs. Music therapists are required to have a bachelor’s degree or higher and at least 1,200 hours of clinical training. They receive instruction in psychology and medicine, as well as music. The music therapy program is part of the ACH Child Life and Education department. Through their
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Your donations to Arkansas Children’s Hospital are making kids better today and healthier tomorrow through music therapy. Thank you! work with patients, Child Life Specialists identify those a long period of time. In a sense, I watch these kids who need extra emotional or physical support. They grow up,” says Andrew. refer these patients to Andrew, who assesses each Andrew sees his patients two to three times per week child to determine the best treatment for him or her. and works with about 15 kids at any one time, although Treatments include creating, singing, moving to or occasionally, that number’s a bit higher. listening to music. “Since working for ACH, I’ve had up to 20 patients One patient in particular, an 18-year-old boy named at one time, but that was challenging,” says Andrew. Kace who suffered a gunshot wound to his head, Currently, he covers five units in the hospital. “I don’t touched Andrew deeply. work in all areas of the hospital because I couldn’t “The bullet entered the left side of his brain which possibly cover them all myself,” he says. controls speech. I was working with him when he said his first complete sentence: ‘My name is Kace,’” says Andrew. Their therapy now includes singing together, and Kace can sing several songs by one of his favorites – Michael Jackson. Other patients who have benefited from this program made possible by your generosity are: • Nicholas, who has severe autism. He “lights up” when Andrew sings to him. Prior to beginning music therapy, the young man had been difficult to manage. He is not able to speak, but makes sounds during his music session. “He’s a great kid, and has a great family "During sessions, her eyes light up and follow me. She gets a little grin on her surrounding him,” says Andrew. face," says Andrew, of Thesea, who is unable to move or breathe on her own. • Baby Thesea, who suffers from a condition that causes her to have no muscular Music therapy is not only new to Arkansas Children’s function. She’s unable to move and is on a ventilator Hospital, it’s relatively new to Arkansas. Andrew hopes and tracheostomy to support her breathing. Andrew to help the state become more familiar with this exciting says, “During sessions, her eyes light up and follow me. field. He says, “Arkansas represents a great opportunity She also gets a little grin on her face.” to expand music therapy as a profession. I’d love to be a • Kylee, who suffers from cystic fibrosis, a part of that.” respiratory condition that requires a one- to two-week Andrew enjoys what he does and is grateful to you for isolation period when first diagnosed and then frequent helping change these children’s lives through music. “It’s clinic visits after release. Andrew visits CF patients so great to see the kids respond and thrive in the musical during their isolation period and at their follow-up environment,” he says. visits. “CF patients come here often for treatment over PHOTOS BY KELLEY COOPER
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Why We Give Grateful grandparents Cynthia and Kirk Dupps say “thank you” with a gift in honor of grandson Jimi Tucker
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ou probably remember Jimi. He graced the cover of ACHiever Magazine in November 2014, decked out in his superhero mask and cape. At the time, 3-year-old Jimi was battling cancer at ACH. He was a very sick little boy. Thanks to support from donors like you, Jimi is in remission! He’s back to being a rambunctious, curious pre-schooler. He loves visiting his grandparents at their lake house, and he still loves Teenage Mutant Ninja Turtles. Of course, his family is very grateful. Recently, Jimi’s grandparents, Kirk and Cynthia Dupps of Eureka Springs, made a generous gift through a charitable remainder trust to Arkansas Children’s Hospital. They hope this gift will help researchers at ACH find a cure for cancer. “When Jimi was diagnosed with Acute Myeloid Leukemia (AML), we did an enormous amount of research on cancer facilities,” say the Dupps. “The protocols at ACH were the most up to date in all pediatric cancer care. The attention given to Jimi by the caregivers and doctors was the icing on the cake that put everyone’s minds at peace regarding his treatments. Since day one at ACH, our family has never had a second thought about whether we made the right choice for his care.”
Jimi spent several months at ACH while he was undergoing treatment. His parents, KC and Josef Tucker of Fayetteville, rarely left his bedside. And there weren’t many days when both sets of grandparents weren’t there, too. “The staff, nurses, physicians, and even the team who cleaned his ‘home away from home’ treated [us] as though we were a part of their family,” notes Cynthia. A retired Walmart executive and former commissioner for the Arkansas Game & Fish Commission, Kirk has always realized the importance of philanthropy. He and Cynthia have always had cancer research and treatment as one of the beneficiaries of their estate. They just never knew it would impact their grandson. “Arkansas Children’s Hospital is the perfect example of how we wanted our gift to be utilized,” say the Dupps. “ACH gives all of us hope … from the patient to the entire family. As grandparents of a child who won his battle with cancer, we’re grateful to have the opportunity to help find a cure. If our experience and charitable remainder trust donation inspires others to give to ACH, then we feel like we’re leaving a lasting legacy.”
You, too, can build your legacy at Arkansas Children’s Hospital. To learn more about planned giving or leaving a gift to ACH in your will, contact the ACH Foundation at 800-880-7491. PHOTOS BY WESLEY HITT
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Your generous support of Arkansas Children's Hospital helps kids like Jimi beat cancer.
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