Champions THE MAGAZINE OF ARKANSAS CHILDREN’S FOUNDATION
JANUARY/FEBRUARY 2019
Because of you, kids like Cooper Hunt receive the
GIFT OF A
NEW HEART
Your
Gifts
Matter!
Dear Champion for Children, Thank you for your generous support of Arkansas Children’s! This issue of Champions is filled with stories that are made possible only because of you. As “American Heart Month,” February is a great time to raise awareness about heart disease and how to prevent it. I hope you enjoy reading about two patients who, with your help, have hearts that beat strong and healthy. Four-year-old Cooper Hunt was born with two severe heart defects and, last July, received the gift of a new heart. And Robert Young, who had surgery for his heart defect at just 1 month old, is now a healthy, active 6-year-old who loves sports like running, water skiing and soccer. You’ll also learn about amazing new technology—a 3D heart printer that’s changing pediatric cardiac care in Arkansas, thanks to donors like you. In addition to heart disease, children are fighting all types of serious illnesses at Arkansas Children’s. On pages 6–7, you’ll meet 3-year-old Mia McCormack. With your help, she’s battling cancer like a champion. Thank you for being her champion. 2019 marks the inaugural year of The Race for a Healthier Tomorrow, a 5k run and 1-mile family fun walk sponsored by the Arkansas Children’s Hospital Auxiliary. The race is scheduled for Saturday, April 13, and will begin on the ACH campus. For more information about The Race for a Healthier Tomorrow, turn to page 9 or visit archildrens.org/race. And finally, the Arkansas chapter of the national Log A Load for Kids program, which partners with Children’s Miracle Network Hospitals to raise funds for children’s hospitals nationwide, is celebrating the milestone of 25 years of raising close to $10 million for programs such as pediatric cardiovascular surgery and cardiothoracic surgery at Arkansas Children’s. With your support, the life-saving work happening every day at Arkansas Children’s will continue. Thank you for being a true champion for children!
Fred Scarborough, CFRE President, Arkansas Children’s Foundation Chief Development Officer, Arkansas Children’s
CHAMPIONS STAFF: Editor Becky McCauley Contributing Writers Ashley Leopoulos, Becky McCauley Designer C. Waynette Traub Photographers Beth Hall, Brandon Markin, Daniel Moody, Ken West 2
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Arkansas Children’s Foundation Board of Directors Chair Charles B. Whiteside III* Vice Chair Jason LaFrance* Treasurer Jake Nabholz* President & CEO Marcy Doderer, FACHE* President Fred Scarborough, CFRE* Ritter Arnold Sharon Bale Ginger Blackmon Frances Buchanan Stuart Cobb Steve Davison Kirk Dupps Harry C. Erwin III* Kim Fowler Sharilyn Gasaway* Robin George* Mike Gibson Sonja Yates Hubbard Brandi Joplin Jim McClelland Mandy Macke Barbara Moore Beverly Morrow Cindy Murphy Marshall Ney Lynn Parker Terry Quinn Sue Redfield Kate Schaffer Jennifer Schueck Michael Shelby Belinda Shults* Claudia Strange Celia Swanson Emeritus Directors Robert G. Cress Don Edmondson Henry Rogers, MD
*Executive Committee Current as of January 1, 2019
The David Clark Heart Center at Arkansas Children’s Hospital Your support helps provide world-class technology that is changing pediatric heart care in Arkansas Because of you, the David Clark Heart Center is leading the way in providing exceptional cardiac care to children in Arkansas. As the only hospital in the state performing pediatric heart transplants and interventions, ACH is looking to technology—such as a 3D heart printer—to reduce the amount of time a patient spends in the hospital and improve outcomes for children battling heart disease. Your support helped the Heart Center at ACH achieve a ranking of 50th among pediatric cardiology and heart surgery hospitals in the country according to the U.S. News & World Report Best Children’s Hospitals 2018–2019 list. This couldn’t happen without you.
Your generous support is helping the Heart Center make a difference for children in Arkansas:
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heart transplants performed in the Heart Center from 2015–2018
750
$
Approximate cost to print one large 3D heart model
45
50%
3D heart models printed since the printer began operation in January 2018
Amount that patient in-hospital stays have been reduced—in part due to use of the 3D heart models
8,600 Approximate number of patient visits and admissions in the Heart Center in 2018
385,000
$
Cost of the 3D heart printer
If you would like to support the David Clark Heart Center, please visit giving.archildrens.org or call the Arkansas Children’s Foundation at (800) 880-7491. Thank you for providing expert pediatric care to patients at Arkansas Children’s!
GIVING.ARCHILDRENS.ORG • CHAMPIONS • J A N UA R Y/ F E B R UA R Y 2019
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All Heart
Because of you, 4-year-old Clarksville boy has a healthy new heart BY BECKY MCCAULEY
W
hen 3-month-old Cooper Hunt’s pediatrician listened to his heart, he knew there was a problem. Cooper and his mom Kristen were sent to the Arkansas Children’s Hospital Jonesboro Clinic for tests. The results were devastating. Cooper had been born with two heart defects that had gone undetected. Coarctation, or narrowing, of the aorta, which means the heart has to pump harder to force blood through the narrow part of the aorta to deliver oxygen 4
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to the body. And severe mitral valve stenosis, which means the valve doesn’t open properly, blocking blood flow coming into the main pumping chamber of the heart.
• CHAMPIONS • BETTER TODAY. HEALTHIER TOMORROW.
Neither of these conditions has many outward symptoms, so Cooper’s diagnosis came as a shock to Kristen. She says, “Cooper has never been sickly. He’s always had severe heart problems, but never any severe health issues.” The next day, Cooper and Kristen made the trip from their home in Pocahontas to Arkansas Children’s Hospital in Little Rock, where Cooper underwent surgery to remove the narrow part of his aorta. Kristen says, “I was so scared. But Cooper’s care team was great, and we were home in 10 days. It was amazing.”
But many challenges still lay ahead for Cooper and his mom. At 7 months old, Cooper underwent a second surgery, this time to replace the faulty mitral valve. At 9 and 11 months, Cooper needed surgeries to remove scar tissue that had formed, blocking the flow of blood. Then, two years later, Cooper had two more procedures in an attempt to fix his heart, but his heart went into shock and his body became overloaded with fluid, causing problems for his liver and arteries. Cooper’s heart was failing. Only a heart transplant would save Cooper’s life. Cooper was added to the transplant list in March 2018. Four months later, on July 12, Cooper’s family got “the call.” A heart was available. “I was trying not to cry but finally just started bawling,” says Kristen of that momentous day. “We waited all day long. Then, at 2:00 in the morning, we heard the helicopter take off to get Cooper’s new heart. The worst part was when the surgical team came and got him a couple hours later. Watching them take Cooper away was one of the hardest things I’ve ever gone through. But by 10:30 that morning, the surgery was over.” It was a success. Kristen is thrilled with the care Cooper has received at Arkansas Children’s Hospital. She says, “ACH is amazing. The nurses are all perfect. Everybody in the cardiovascular intensive care unit (CVICU) was perfect. They made Cooper feel happy all the time because they were always happy.” The family-centered care at Arkansas Children’s also made a big impression on Kristen. She says, “I’m so comfortable at ACH. I would never want to be anywhere else. We
had the opportunity to move Cooper to a children’s hospital out-of-state and we said, ‘never!’ We know ACH will do everything in their power to take care of both of our boys.” Cooper’s 3-year-old brother Kason has also been treated at ACH. A couple of months after Cooper’s heart transplant, Kason was admitted to the Emergency Department with a severe rash. Kristen says, “Even in the ED, they were completely amazing. We had gone to two other EDs and they both misdiagnosed the rash.” Kason couldn’t see his brother until the rash cleared up, but eventually, he made a complete recovery. Physical therapy is helping Cooper relearn to walk properly after being in a hospital bed for four months. He will be on medication to keep his body from rejecting his heart for the rest of his life. And he will continue follow-up care at Arkansas Children’s through adulthood.
Because of you, children like Cooper receive world-class cardiac care at Arkansas Children’s. Otherwise, Cooper is a vibrant, happy, energetic little boy who loves animals, cars and playing outside with his brother. But he especially loves to paint. In addition to art therapy at ACH, Cooper also received music and physical therapies, all of which he loved. Kristen is grateful to donors like you for the life-saving care only a children’s hospital can provide. She says, “Thank you so much. There would be a lot of little lives not saved without your help. We’re very, very thankful for everything Arkansas Children’s Hospital has to offer.”
A NEW PERSPECTIVE These colorful 3D models of actual patients’ hearts are changing the standard of pediatric cardiovascular care in Arkansas. In early 2018, thanks to Dee Ann and Don English, the Clark Family Foundation and donors like you, the David Clark Heart Center at ACH purchased a 3D heart printer. This incredible technology is currently available at just a handful of children’s hospitals around the country. The 3D printer creates exact replicas of patients’ hearts in layers of rubber or plastic that can be used in a variety of ways. Doctors can study the models to help plan surgeries and practice on them before operating. They can also be used to explain complex heart conditions to families in a way that helps them understand the defect and procedure. And finally, the models are used to educate students, residents and other healthcare providers about congenital heart defects. To date, 45 heart models have been produced at ACH, improving patient safety during surgeries and reducing the duration and number of invasive procedures required.
GIVING.ARCHILDRENS.ORG • CHAMPIONS • J A N UA R Y/ F E B R UA R Y 2019
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The
Word
Your support helps North Little Rock mom and daughter cope with devastating diagnosis BY BECKY MCCAULEY
Because of you, 3-year-old Mia McCormack, who is battling cancer at Arkansas Children’s, receives the expert, child-centered care she needs. Her mom Camille says, “Thanks to donors who support ACH, the little details are taken care of so we can focus on the big details.“
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W
hen Camille McCormack’s 3-year-old neuroblastoma, which are tumors that form in daughter Mia said, “Mama, we need to young nerve cells. It was described to Camille as go to the hospital and find out what’s being shaped like a hotdog bun, and is located in wrong with me,” Camille knew something was Mia’s abdomen between her liver and adrenal gland. very wrong. According to Mia’s doctors, she has “breezed Last spring, Mia, who is typically a happy child through” her treatment with very few who loves to sing and dance, began doubling over complications. Several rounds of chemotherapy with pain in her stomach. After several visits to shrank the tumor and surgery removed about Mia’s primary care doctor who treated her for acid 98 percent of the mass. Her stem cells were reflux and gastritis, Camille knew it was time to harvested prior to chemo, and she’s since received get some answers. an infusion of her stem cells to replace the healthy A trip to the Emergency Department (ED) at cells lost during chemo treatments. Another Arkansas Children’s Hospital changed their lives. stem-cell reinfusion and radiation to kill any Mia’s ED doctor ordered an x-ray and a CT remaining cancer cells are in her treatment plan. scan. Camille says, “The technicians took a lot of Although this has been a very difficult, very pictures. Then they said they were going to show scary time for Camille, she’s thrilled with the the doctor and took a long time coming treatment Mia has received at ACH. She back. It was then that I knew.” wanted to share Mia’s story to show Camille’s precious daughter her gratitude to both the hospital had cancer. and to people like you who make “The first impression I have it possible: “I would do anything of ACH is when I was told for ACH. Mia’s room is so about Mia’s diagnosis,” says colorful and homey, it’s not Camille. "The doctor stood cold and sterile. Thanks to Northwest Arkansas cancer patients with me, held me and cried donors who support ACH, the can now receive chemotherapy with me. I know how busy little details are taken care of treatments in the cheerful doctors are, and that she could so we can focus on the big infusion center at ACNW. take a moment and empathize details. I don’t always get physical PHOTO BY KEN WEST with me is one of the many reasons rest, but I have peace of mind.” why I chose ACH for Mia’s treatment.” “Our social worker has been Unfortunately, Camille has had a lot of amazing. And the nurses…it’s like heaven experience with cancer, or “the C word,” as she calls opened up and let a lot of angels loose. Just walking it. She’s lost many family members to the C word onto the hematology/oncology unit, you can feel in recent years, including both parents, her their warmth,” Camille continues. grandmother and her mother-in-law. The Child Life department has also been an Camille, who is a therapist, says, “I don’t use the important part of Mia’s treatment. According to word ‘cancer’ with Mia. She was with our family Camille, Mia suffered from night terrors for about members during their illnesses, and knows they two weeks during her first stay at ACH. A staff passed away. I don’t want her to relate herself with member referred her to Child Life, who arranged what happened to them.” for her to receive both art and music therapy. Camille also uses other words for this terrible Camille points out that Mia has never been disease. “Mia is very bright. Very articulate. reluctant to come to ACH. “That means a lot,” she She’s even asked me directly if she has cancer. says. “To have a place where she feels comfortable I usually answer her, ‘Some people call it that. I like during this terrible time. She can push her little to call it ‘mass’ or ‘tumor,’” she says. IV pole down the hallway and the nurses and staff Mia has a rare form of cancer called ganglia are smiling. We are enveloped with love here.”
Because of you, children like Mia receive the expert pediatric care they need to get better today and be healthier tomorrow. Thank you for your generous support. GIVING.ARCHILDRENS.ORG • CHAMPIONS • J A N UA R Y/ F E B R UA R Y 2019
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A Boy’s Special
Heart
Because of your support, Northwest Arkansas heart patient is living a healthier tomorrow BY ASHLEY LEOPOULOS
M
ary and Stephen Young watched the hours slowly tick by as their 1-month-old son Robert underwent open-heart surgery in the operating room at Arkansas Children’s Hospital. Just hours after Robert was born, his care team discovered a murmur and Robert was diagnosed with a heart defect called tetralogy of Fallot (TOF). Robert’s care team advised the Youngs to monitor Robert, to keep him calm and to not overexert himself by crying. “Our goal was to make it to 3 months old before surgery,” said Mary. “He turned a month old and received an echocardiogram at ACH. They looked at his results and knew he needed surgery immediately.” For eight hours, the cardiology team worked to repair Robert’s heart and updated the family every 60 minutes. “We had a private area to wait with our family,” said Mary. “People from the Pastoral Care department prayed with us, and social workers told us where we were going to sleep that night. For as long and as terrible as that day was, it was nice to have distractions and their support.” After hours of hoping, praying and waiting, Mary and Stephen were able to see their tiny son. “We were prepared for what Robert would look like post-operation,” said Mary. 8
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“But even with tubes coming out of him, the first thing I noticed were his pink lips.” For the first time, Robert’s body was receiving enough oxygen to give him a healthy, pink glow. Following Robert’s operation, he experienced setbacks for a few days before making a strong, full recovery. “The round-the-clock care in the Cardiovascular Intensive Care Unit was fantastic,” says Stephen. Before going home, Mary and Stephen attended a CPR class at ACH, and the Child Life and Education team taught them a special technique to massage baby Robert after the operation. “I felt so comfortable leaving the hospital knowing how to take care of his special heart,” said Mary. Thanks to donors like you, Robert is now 6 years old and in kindergarten. He loves lunch and playing with his friends at recess. Robert understands he has a special heart, but nothing slows him down. This year, Robert ran a triathlon, a 5K on Thanksgiving Day, water skied this summer and was cleared by his care team to play soccer. “With Robert, we enjoy each day,” said Stephen. “We wait to see his test results because we know he’ll need a valve replaced in the future.” The Young family are grateful for a strong, happy little boy and the ACH team who saved his life.
• CHAMPIONS • BETTER TODAY. HEALTHIER TOMORROW.
5K Timed Race & 1-Mile Family Fun Walk 8 a.m. Race Begins
Arkansas Children’s Hospital, Little Rock Strollers and wheelchairs are welcome! Register before April 10, 2019 Free t-shirt for adult and youth participants Top: Six-year-old Robert Young with parents Mary and Stephen and brothers 9-month-old Dylan and 4-year-old Julian. Both of Robert‘s siblings are patients at Arkansas Children’s Northwest.
Adult (18 or Older) – $25 • Youth (5–17) – $10 • Child (Under 5) – Free Can’t be there in person? Join the race as a virtual runner or walker for $30 (t-shirt included)
Register and create your personal fundraising page at: archildrens.org/race
Above: Thanks to your support, Robert was able to run a triathlon and a 5k this year. Since ACNW opened in January 2018, heart patients in Northwest Arkansas can now receive care close to home. GIVING.ARCHILDRENS.ORG • CHAMPIONS • J A N UA R Y/ F E B R UA R Y 2019
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A
WHY WE GIVE
ARKANSAS LOG A LOAD FOR KIDS Dedicated volunteer fundraisers celebrate 25 years of helping make children better today and healthier tomorrow
single moment can be a catalyst for lasting impact. Little did Frank Wilson, Shelby Taylor and W.A. Winston know when they met with Jacquelyn Kelley of the Arkansas Forestry Association at a small café in Fordyce in 1991, they would kick-start a movement that would champion generations of Arkansas children. The Arkansas chapter of Log A Load for Kids was born. Log A Load for Kids is a national program that began in 1988 in South Carolina when two loggers, Larry Connelly and his wife Carol, wanted to make a positive impact on their community. Together with the support of Children’s Miracle Network Hospitals (CMNH), they established the Log A Load for Kids program to provide funds for pediatric hospitals. In 1991, Frank, Shelby and W.A. agreed they would raise $25,000 to support Arkansas Children’s Hospital through the CMNH Telethon. The first few years presented a number of fundraising challenges for the Arkansas Log A Load for Kids chapter. “Richard Shaw and I called potential supporters,” said Frank. “We got hardly any response in the beginning. I’m not sure we raised enough money to pay for the catfish dinner we hosted that year.” From the land owners to the sawmills and forest product companies, each contributor donated their portion of the logging process in honor of the kids at Arkansas Children’s. With several years of determination and hard work, Frank and Shelby attribute the success of Arkansas Log A Load for Kids to the Arkansas Forestry Association and the Arkansas Timber producer volunteers who expanded the charge statewide. After two years of successful fundraising, Arkansas Log A Load for Kids was formally established in 1993. “Richard Shaw, Rob and Nancy Loomis, Sonny Jones, Mike Pennington, Charles Ledbetter and Joe Willet led the statewide effort. Once people understood we were fundraising for Arkansas Children’s Hospital, people began
BY ASHLEY LEOPOULOS
Throughout the past 25 years, Arkansas Log A Load For Kids has funded five endowed chairs for Arkansas Children’s, including a $4 million endowment in support of the Emergency Department at ACH.
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Arkansas Log A Load for Kids leadership attends the investiture of Dr. Brian Reemtsen (front) as the chairholder of the Log A Load for Kids of Arkansas Endowed Chair in Pediatric Cardiovascular Surgery in April 2018.
to share their personal stories,” said Frank. “It was remarkable to learn just how many people had been cared for by Arkansas Children’s.” Celebrating their 25th anniversary of championing children, Arkansas Log A Load for Kids leads as the highest fundraising Log A Load chapter in the country through CMNH. Since 1993, Arkansas Log A Load for Kids has created a lasting legacy at Arkansas Children’s through their support of many different areas of the hospital, including endowments for the pediatric emergency department and trauma unit, pediatric cardiovascular surgery and the Angel One helicopters. In 2017, the Arkansas chapter committed to raising $1.5 million to fund a cardiothoracic surgery endowment, bringing their combined philanthropic support to nearly $10 million. “It’s amazing to see the enthusiasm of the next generation,” said Shelby. “Bobby Taylor, Kipp Queathem and Lee Anne Fitzgerald have taken charge of the central Arkansas chapter and have kept us moving forward. I’ve always felt good about the contribution Log A Load has made for the kids at Arkansas Children’s. It’s one of the best ways a person can give back.”
Thank you to these Arkansas Log A Log for Kids chapters: • • • • • •
Bradley County Central Arkansas Drew County River Valley South Central Arkansas Texarkana
Arkansas Log A Load for Kids champions children at Arkansas Children‘s every day. GIVING.ARCHILDRENS.ORG • CHAMPIONS • J A N UA R Y/ F E B R UA R Y 2019
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Your Gift Matters “Knowing Arkansas Children‘s Northwest is just down the road is a great benefit. Getting Morgan checked out doesn’t require a full day of missed school or work— just a couple of hours.” ~ MELISSA SMITH
GRATEFUL PARENT OF MORGAN
BE A CHAMPION FOR CHILDREN
You can help children like Morgan get better today and be healthier tomorrow. A gift of $25, $50, $100 or more to Arkansas Children’s makes a huge difference in the life of a child.
PLEASE GIVE GENEROUSLY!
To give a one-time gift or become a monthly Miracle Maker, use the enclosed envelope, visit giving.archildrens.org or call (800) 880-7491.