St. Louis Children's Hospital Magazine: Fall 2023

doing what’s right for kids

04 Research & Discovery

06 Community Impact

08 Excellence in Care

St. Louis Children’s Hospital Foundation 1001 Highlands Plaza Drive West, Suite 160 St. Louis, MO 63110 314.286.0988 or 888.559.9699 ©2023 StLouisChildrens.org/Giving

Stories made possible by you.

Editor: Janelle Ammel | Janelle.Ammel@bjc.org

Dear Friends,

Tanya L. Waskiewicz Chief Development Officer, St. Louis Children’s Hospital

Dear Friends, This holiday season marks a special milestone for St. Louis Children’s Hospital Foundation as we celebrate 30 years of serving the health needs of children in our community. For the past three decades, generous donors like you have enabled us to support the hospital’s mission to do what’s right for kids. Your contributions over the years have truly made a difference in the lives of countless children and families during their most vulnerable times. As we reflect on the past 30 years, we also look ahead to the future and continuing our work to ensure St. Louis Children’s Hospital remains a leader in pediatric medicine. We hope we can continue to count on your support as we embark on the next chapter of supporting the health and well-being of children in St. Louis, across the United States and around the world.

We have been fortunate to host several events over the last few months that benefit the Foundation while allowing our donors to come together. Attendees heard from a few very brave patients who wanted to share their medical journeys with St. Louis Children’s Hospital and how donor-funded programs like Child Life Services and expressive arts therapy allowed

them the chance to just be kids while helping them through their treatments and hospital stays.

Washington University School of Medicine and St. Louis Children’s Hospital continue their transformational research through the Children’s Discovery Institute. Since its inception in 2006, the progress made has been incredible. The story on Pages 4–5 will give you a glimpse into the past and share a vision for the future. It’s an exciting time for scientific advancement and we hope you share our passion for finding groundbreaking treatments for kids and families who need it most.

We welcomed a new and much-needed mobile van program to the Healthy Kids Express lineup earlier this year with a ribbon-cutting ceremony. It was a culmination of years of research, preparation and fundraising to make this a reality.

I hope you enjoy the story detailing why this new program will help even more St. Louis area children receive the healthcare they need without ever leaving their own community.

As we close out the year, I’m reminded of the families who will spend their holidays inside the hospital walls instead of at home with their loved ones. There are many opportunities to help ensure patients and their caregivers have a joyful holiday season no matter the obstacles they’re facing. I hope that you will continue to find joy in your own heart and make an impact on the patients and families we serve.

Warm Regards,

Tanya L. Waskiewicz

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Research & Discovery

Community Impact

Excellence in Care

Heroes at Work

Doing What’s Right for Kids

ONLY at St. Louis Children’s

Researchers utilize vital funds to discover scientific advancements in child health

New program mobilizes care for children with diabetes

Furry friends add joy when making their rounds

One team’s work has made children’s dreams come true for 20 years

Hospital programs come together to provide families exactly what they need

The Heart Center celebrates a very meaningful milestone

Highlights & Happenings

St. Louis Blues defenseman Colton Parayko’s Project 55 Foundation hosted the 2nd Annual Parayko Invitational golf tournament on August 28 to raise funds for its charitable partners. St. Louis Children’s patient Colin and his mom also spoke to attendees during the event’s evening program. Project 55 will donate a third of the proceeds to the Child Life Services Department at St. Louis Children’s Hospital, where Colton regularly volunteers.

The Foundation hosted the 39th Annual St. Louis Children’s Hospital Day at Six Flags on September 8 for 3,800 guests. All attendees enjoyed rides without lines, a BBQ dinner and unlimited treats throughout the park. This year’s event raised more than $625,000 for the hospital’s areas of greatest need.

Athletes capped off months of training at the St. Louis Children’s Hospital’s Tri My Best adaptive triathlon for children with motor disabilities on September 10. More than 45 participants completed versions of the swim, bike and run tailored to each athlete’s mobility level. Family, friends and volunteers were on hand at Washington University in St. Louis to celebrate these athletes and all their hard work.

Thank you to Joe Buck for hosting the 22nd Annual Joe Buck Golf Classic on Monday, June 5! This year was a record breaker, with the event raising more than $763,000. Proceeds from the tournament over the next few years will support the construction of the new MRI Suite in the Joe Buck Imaging Center. Following the day of golf, guests enjoyed mission programming featuring St. Louis Children’s patient Rylee.

In August, KIDstruction Week celebrated its 12th year! KIDstruction Week is an opportunity for the St. Louis regional architecture, construction and engineering industries to join together to support patient-centered care at St. Louis Children’s. Our three patient ambassadors — Auggie, Bella and Colin — are grateful for those who give to St. Louis Children’s Hospital and programs that allow kids to have a sense of normalcy during their medical journeys.

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Research & Discovery

Founded in 2006, the Children’s Discovery Institute (CDI) is a partnership between St. Louis Children’s Hospital and Washington University School of Medicine (WUSM) to find innovative, more precise and personalized treatments for a spectrum of childhood diseases. Without this type of research, there is no progress.

The Children’s

Discovery Institute

Paradigm-shifting advancements in medicine allow patients to benefit from extraordinary work being done right here in St. Louis

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St. Louis Children’s Hospital Foundation Magazine

The MD and PhD scientists and clinical staff at the CDI are relentlessly focused on speeding the path from laboratory research to life-changing therapies.

As a leading center for pediatric research, the CDI model is unique in its cross-disciplinary, collaborative approach to rigorous science intertwined with world-class patient care. Washington University investigators are at the forefront of developing personalized medicine for children and families who currently have limited options for treatments or cures.

For nearly 15 years, the CDI primarily focused on four specific pediatric disease areas: congenital heart disease, cancer, lung and respiratory disorders, and musculoskeletal diseases. Progress has been made and clinical trials have provided gamechanging results. It’s now time to advance initial findings and propel St. Louis Children’s Hospital and WUSM forward into a new era of research and discovery.

15 Years of Progress

Building on Success

Since 2006, St. Louis Children’s Hospital Foundation has granted more than $93.9 million to advance CDI pediatric research.

These changes in focus of disease and allocation of funds will spur faster scientific advancement and greater collaboration across disciplines, creating a stronger, more expansive CDI. This vision has already enabled the establishment of multiple Centers thanks to donor support.

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This philanthropic investment of CDI investigator-led projects has had a remarkable return on investment, with the generation of more than 1,439 research papers.

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More than 240 grants have been awarded to researchers since the CDI’s inception.

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Awardees have leveraged their initial seed funding to gain more than $550 million in additional funding resources from the National Institutes of Health (NIH) and other organizations. In other words, for every $1 invested by the CDI to stimulate new research and treatment, the clinical investigators attract $5 in additional funding to advance discoveries.

Looking Ahead The breakthroughs enabled through your ongoing support are providing answers for children and families living with pediatric illness. With the proven success of the CDI model, the team will expand the scope of research supported by the CDI to encompass many more areas of child health by establishing Centers of Excellence.

These Centers will bring a laser-like focus on children’s diseases by combining clinical and laboratory-based approaches using diverse teams of investigators.

Donor gifts will continue fueling hope that earlier, more accurate diagnoses will lead to improved treatments and outcomes.

They will also allow us to invest in fostering and supporting young investigators in their early careers as we strive to build long-term collaborations with these talented scientists.

Left: Thanks to a CDI-supported study, St. Louis Children’s patient Gabby and her family were able to find sought-after answers regarding her rare genetic syndrome known as neonatal progeroid syndrome.

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The Hermann Center for Child and Family Development is designed to blend world-class research with a revolutionary model for whole-family behavioral healthcare.

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The Center for Pediatric Pulmonary Disease and Asthma was created with the goal of discovering more targeted, effective, rational and personalized treatments and interventions for children with respiratory issues.

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The McDonnell Pediatric Cancer Center will help advance some of the world’s most innovative research-based treatments and create pediatric clinical trials for children.

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The Center for Pediatric Immunology researches genetically-based immune disorders in children, investigating new approaches for discovery, faster diagnosis and treatment innovations.

CDI Awards by Center 2006–2021: $85.6 million Metabolism and Immunity — $22.1M Cancer — $21.1M Pulmonary Disease and Asthma — $15.6M Unrestricted CDI Funding — $13.8M Congenital Heart Disease — $11.5M Personalized/Precision Medicine — $1.5M

2022: $8.3 million Center for Pediatric Pulmonary Disease and Asthma — $2.9M Hermann Center for Child and Family Development — $2.1M McDonnell Pediatric Cancer Center — $1.4M Metabolism and Immunity — $1.4M Child Health Discovery Fund (unrestricted) — $450K

If you would like to help fund groundbreaking pediatric research, please visit StLouisChildrens.org/Give to donate today.

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Community Impact

Healthy Kids Express Expands to Include Diabetes Care Removing barriers to access ensures children receive routine care closer to home

Members of the local community and St. Louis Children’s Hospital gathered together to celebrate with a ribbon-cutting ceremony.

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St. Louis Children’s Hospital Foundation Magazine

For kids living with diabetes, managing a chronic disease can be hard. Because it affects every aspect of a child’s life — academic, social, emotional and physical — a variety of support is needed to ensure success.

Thanks to generous donations, St. Louis Children’s Hospital and Washington University Physicians recently unveiled an innovative project — the first mobile pediatric diabetes unit in the nation — to address the needs of kids in the St. Louis area. A ribbon-cutting ceremony was held on May 15, 2023, to celebrate the milestone. The program, which is part of the Healthy Kids Express umbrella of services and began service in February 2023, will make visits to schools in north St. Louis County to help students manage diabetes and prevent the disease.

There are two types of diabetes, a condition in which the body can’t make enough insulin or can’t use insulin normally.

Type 1 diabetes is an autoimmune disorder, considered a long-term condition and may start at any age. There is no cause and it often appears suddenly. Type 2 diabetes is a metabolic disorder and risk factors include family history, excess weight and lack of exercise.

Washington University physician and Division Chief of Pediatric Endocrinology and Diabetes Ana María Arbeláez, MD, MSCI, oversees the program, which is located in five area school districts where physicians saw an increase in the number of children with Type 1 diabetes and those who came into the hospitals with high risks of developing Type 2 diabetes. It focuses on middle- and high school-aged children, who often go undiagnosed.

Providing mobile care in their neighborhoods helps to remove barriers to diabetes care and other services that help save their lives. Program staff aims to educate, empower and equip families to feel comfortable navigating their chronic conditions, or for those with pre-diabetes, helps prevent them from developing the condition altogether. Students will be

Mobile vans allow children to receive care in their community, making it easier to access to much-needed services.

screened for diabetes complications through blood and urine tests, and checked for retinopathy, an eye condition linked to diabetes that is the leading cause of preventable blindness. The mobile unit team will discuss nutrition with children who are at risk of developing diabetes and properly train students and more than 250 school nurses on how to inject insulin shots and use insulin pumps and glucose monitoring machines.

All services are free of charge and covered by generous donations to the St. Louis Children’s Hospital Foundation.

St. Louis Children’s Hospital is one of the world’s leading treatment and clinical research centers for diabetes, providing comprehensive care for pediatric patients throughout the entire diagnostic and treatment process.

As the metro area’s largest pediatric diabetes program, the diabetes team sees patients from Missouri, Illinois, Arkansas and Kentucky for treatment.

It is also the only pediatric hospital in St. Louis accredited by the American Diabetes Association. Historically, St. Louis Children’s Hospital was the first to treat a diabetic child in the United States with insulin.

“It has never been clearer that the one-size-fits-all health model is no longer applicable for diabetes management,” said Dr. Arbelaez. “The Healthy Kids Express Diabetes Mobile Unit meets patients where they are and builds a stronger, inclusive and healthier community for those living with diabetes or prediabetes through prevention, screening, education and treatment programs.”

If you would like to ensure more children are served through community programs, please visit StLouisChildrens.org/Give to donate today.

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Excellence in Care

Four-Legged Employees Bring Out the Best in Patients and Families Care comes in all shapes and sizes

Duo Dog Casey is trained to make a significant impact on the patients and families at St. Louis Children’s Hospital.

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St. Louis Children’s Hospital Foundation Magazine

The bonds between kids and dogs have always been seen as strong. The St. Louis Children’s Hospital facility support dog program aims to provide assistance with coping and help reaching therapeutic goals while enhancing the experience of patients undergoing healthcare treatment at St. Louis Children’s.

St. Louis Children’s partnered with Duo Dogs, Inc. to receive a chocolate Labrador retriever named Duo Dog Casey, the first facility dog, in February 2020. Trained by Duo Dogs, a local nonprofit organization that places facility dogs to serve physically, psychologically or socially vulnerable populations, his timing was impeccable as the COVID-19 pandemic hit shortly after. Assigned to a team of handlers, Casey has been working five days per week to provide support to patients and staff since his arrival. Thanks to donor support from corporate partner Purina, Casey’s care, including insurance and health expenses, is covered, which is essential in ensuring he remains healthy and safe to support our patients.

In 2022, Casey participated in more than 1,000 patient visits, including supporting kids during procedures — IV placements, chest tube removals, vaccinations and more — and motivating them during therapy sessions. He was also present during difficult conversations with patients and provided much-needed support during end-of-life care.

It’s truly incredible to watch Casey’s impact on patients and families. For one patient, Casey was present through much of her journey to recovery. Casey first met her while she was in the pediatric intensive care unit (PICU). During the first meeting, the patient was intubated and sedated, but her mom let the care team know how comforting dogs were to her. The next day, Casey was present when she had the tube removed from her trachea and she placed her hand outside her bed to pet Casey’s head. This continued for several days until she was able to move more on her own.

Casey then moved to a motivational role. During one visit, the patient was practicing sitting at the edge of her bed with her physical therapy team. Casey encouraged her to move more than she had in the past few weeks. After the patient was transferred to another unit to

Duo Dog Opal spends her days assisting children who are facing difficult situations and rely on Opal to help them through their journeys.

continue her rehabilitation, Casey continued to be a scheduled part of her daily physical therapy sessions. Over time, she continued to be motivated by Casey’s presence — progressing from sitting to pet him to throwing a ball for him to fetch. She finally was able to walk with Casey around the entire unit while using her walker.

Duo Dog Opal joined the St. Louis Children’s facility support dog program in June 2021. She serves as a member of the Child Protection Program, a team of medical personnel who specialize in evaluating cases of suspected abuse or neglect. Opal visits with patients and caregivers and the team hopes she will help to improve attendance rates to the program’s outpatient clinic, which will only allow for more advocacy and care for children who are victims of suspected abuse or neglect.

She also spends extensive time in the pediatric behavioral health unit. Opal joins a daily morning meeting, where patients and staff set goals for the day. After that, she attends therapy sessions, where Opal goes from patient to patient. The therapy groups work on self-discovery, selfesteem and social interactions among other things. Patients consistently say her visits result in an increase in mood and less anxiety.

Thanks to Duo Dogs and Purina and their support of Casey and Opal, both dogs continue to make a positive impact on patient-centered care by providing support and encouragement to the patients and families at St. Louis Children’s Hospital.

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Heroes at Work

20 Years Strong and Still Moving Beyond Expectations Adaptive camps and events give confidence to kids living with movement disorders

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Riding a bike, winning a championship trophy or jumping off a diving board to the cheers of a crowd are all things children typically experience as part of growing up.

But for some kids, these moments, meant to symbolize summer freedom and fun, can be heartbreaking if they are affected by any type of movement disorder or disability that limits their activity.

Thankfully, people like Jennifer Miros understand how important it is for these kids to have exposure to activities that they, or their families, did not think were possible. Jennifer, supervisor of the Cerebral Palsy Center at St. Louis Children’s Hospital, and her team are credited with 20 years of success since starting Camp Independence in 2003. The camp was originally made possible by a generous gift from Carol and Paul Hatfield to St. Louis Children’s Hospital Foundation to establish the Carol and Paul Hatfield Cerebral Palsy Sports and Rehabilitation Center. Camp Independence

is an adaptive sports day camp designed for kids ages 7 and up.

“By learning how to play an adaptive sport, many of these kids find something they like to do to keep them moving,” said Jennifer.

“Camp Independence not only provides a physical outlet, but it also provides socialization and an opportunity for kids to be around others who are like them.”

Although the camp is celebrating its 20th anniversary this year, the need for this type of event is stronger than ever. “As we were coming out of the pandemic, we especially saw the respite that was needed for these parents to see their kids go to a camp and do activities while remaining safe,” Jennifer added. “A lot of these kids were unable to receive school services during the pandemic so continuing this camp 20 years later is still very important.”

Camp Independence isn’t the only opportunity for these kids to shine. The addition of the Tri My Best adaptive triathlon created a complementary event to Camp Independence. Athletes train throughout the year and complete versions of the swim, bike and run tailored to each athlete’s mobility level. The best part of this event is that it gives the athletes a reason to train and stay active throughout the year by promoting physical fitness and endurance.

While 20 years has passed in the blink of an eye, the impact Jennifer and these programs are making on lives is permanent.

“This is life-changing for some kids. They are more confident in school and that leads them in a courageous direction to possibly take a leap of faith to do more. This could be going to college or getting a certain type of job, but in the end, it raises their expectations of themselves and that is what independence means for anyone,” Jennifer concluded.

Through

Olivia’s Eyes “There are so many fun activities at Camp Independence and Tri My Best. I have been involved for many years and hope to be for many more. I have several favorite activities at Camp Independence. First, we get to go swimming outside. We do a six-minute race, and I love that I get time to talk with my friends. Another one of my favorite activities is the games, such as mini golf, beanbags and dice games. The counselors are nice and fun too! Finally, my favorite thing is eating blue popsicles.

There are so many fun events at Tri My Best.

I like running the best because I’m fast.

I also like the competition. However, my favorite part about Tri My Best is the people cheering me on, like my family and friends.

Lastly, we get medals!

Tri My Best and Camp Independence make my summer fun. Thank you to everyone who donates! I will be coming back!”

— Olivia, St. Louis Children’s patient

Left: Jennifer Miros (center) and her team, including Julie Grassi (right) and Mary Eckhard (left), support the year-round planning that makes Tri My Best and Camp Independence so successful.

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Doing What’s Right for Kids

Home Away from Home Programs work together to give families what they need

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Bella isn’t a kid who likes to be inside sitting down. The 7-year-old is a social butterfly, full of energy and makes time to play with her cousins as much as she can while living with a lifelong condition that requires care from St. Louis Children’s Hospital.

When she was 8 days old, Bella’s mom received a call that would change their lives forever. Her newborn screening came back positive for sickle cell disease — an inherited, genetic disease that alters the shape of the body’s red blood cells, causing them to become sticky and trapped in the body’s blood vessels. Because the cells do not flow properly through the bloodstream, those with sickle cell disease can experience terrible pain, anemia, jaundice, strokes and inflammation in the lungs that makes it hard to breathe. Knowing their daughter was living with the disorder left her parents devastated, but they knew they had to stay strong for Bella.

Since Bella’s diagnosis, she and her parents have been under the care of the sickle cell program at St. Louis Children’s, the largest and most experienced program in Missouri.

Over the years, Bella and her family have relied on their care team to help them stay educated on the disease and manage her symptoms. Bella must attend routine appointments that include lab work and outpatient treatments to help her avoid pain, hospitalizations and organ damage. For most children like Bella living with sickle cell disease, their care team becomes a second family due to the lifelong support provided to the patient and families.

When she is hospitalized due to complications from her disease, Bella likes to go to the Child Life playroom to escape the reality of her disease. She especially enjoys playing with

Left: Bella and her parents feel safe knowing St. Louis Children’s Hospital is giving their family the best care possible.

Right: Bella’s personality shines bright, even on her toughest days.

the kid’s kitchen and pretending to fix things with the play tool set. And when Bella isn’t feeling up to leaving her room, the Child Life team comes to her room and brings toys she can play with from the comfort of her bed. This makes the inpatient experience less scary for Bella and helps her stay brave while inside the hospital walls.

Bella and her parents continue to manage her disease with medication and make sure to attend her routine medical appointments. Every time she comes to the hospital, she spends time in the Olson Family Garden or visits the Child Life playroom, two of her favorite places at St. Louis Children’s. These donor-funded programs give kids the chance to just be kids when dealing with fear and trauma, which is a vital part of the healing process and successful long-term recovery. Generous donor support gives all kids who come to St. Louis Children’s the chance to grow up and live their best lives.

To help more kids like Bella, scan the QR code or visit StLouisChildrens.org/Bella.

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One for the Record Books Pediatric transplant milestone makes history

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St. Louis Children’s Hospital Foundation Magazine

The St. Louis Children’s and Washington University Heart Center is the region’s largest pediatric heart center and is nationally recognized as a top cardiology and heart surgery program. The team is now also known for being the ONLY pediatric transplant center to complete its 600th pediatric heart transplant.

The milestone occurred in June 2023 and it was an opportunity to showcase the importance of pediatric transplants.

Many children who are facing certain death due to major organ failure are receiving an opportunity for a nearly normal quality of life through organ transplantation. The Heart Center ensures that every transplant candidate and family receives individualized attention to help prepare physically, emotionally and financially for the major issues involved in these procedures.

Education of the patient and family about monitoring and administering anti-rejection medications, recognizing signs of infections or rejection and returning to a normal lifestyle is critical to the patient’s success.

From initial candidate selection and evaluation for an organ transplant, through management of the disease during the wait for organs, onto the surgery itself and vital follow-up care, the needs of the children and the support needs of their families are the core focus of the team.

The Washington University cardiologists at St. Louis Children’s care for more children with heart disease than any other center in the region, and the center is the region’s go-to heart program for second opinions and referrals for advanced heart care.

In many cases, we are creating new standards of care for children with complex heart conditions.

Family-centered care, innovation that saves lives and getting children back home sooner — these are just a few of the reasons why The Heart Center leads the way in the Midwest.

The Heart Center is now looking to the future.

According to Washington University cardiologist and St. Louis Children’s Hospital Chief of Cardiology Andrew Glatz, MD, there is a growing

Left: Kyndric, 8-years-old, has been the recipient of not one but two transplants at St. Louis Children’s Hospital.

Members of the Heart Center team like Zoe, right, ensure patients receive the best care possible during their time in the hospital.

population of babies being born with congenital heart disease. This means that The Heart Center will see even more patients with congenital or acquired heart defects and disease.

Donor gifts are also vital to ensuring success now and in the future. Funds not only help with research, which has allowed physician-scientists to be at the forefront of pediatric heart transplants, but also help with hospital programs and services all families utilize while their children are hospital patients. It takes a team of people and services to support not only the family, but the patient as well, so that everyone can return home.

St. Louis Children’s Hospital has been at the forefront of pediatric organ transplantation in the United States, thanks in part to its close association with Washington University School of Medicine. Our accomplishments in transplantation have been recognized with national certification by major insurance providers and CHAMPUS (Civilian Health and Medical Program of the Uniformed Services), and our success is due to highly skilled teams of healthcare professionals who have decades of experience in providing compassionate care for children and their families. The St. Louis Children’s and Washington University Heart Center performed one of the Midwest’s first pediatric heart transplants in 1984 and is one of the top three centers in pediatric heart transplants by volume.

If you would like to ensure more kids with complex heart conditions are given the opportunity to live healthier lives, please visit StLouisChildrens.org/Give to donate today.

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St. Louis Children’s Hospital Foundation 1001 Highlands Plaza Drive West, Suite 160 St. Louis, MO 63110 314.286.0988 or 888.559.9699 StLouisChildrens.org/Giving

How you can help kids this holiday season!

There are many ways you can support our patients and their families during this holiday season. We invite you to visit StLouisChildrens.org/HolidayGiving or scan the QR Code to learn about the many ways you can help us do what’s right for kids this holiday season!