St. Louis Children's Hospital Magazine: Winter 2025
Editor: Janelle Ammel | Janelle.Ammel@bjc.org
Tanya L. Waskiewicz
Chief Development Officer, St. Louis Children’s Hospital
Dear Friends,
I first want to wish you a happy new year! The holidays are a wonderful time to gather with friends and family from near and far. There is so much joy and goodness that transpires from the giving spirit, and St. Louis Children’s Hospital Foundation sees it all firsthand through the generous donations we receive as well as the celebrations at the hospital for our patients and their families.
As you read this issue of the magazine, I think you will be excited to see how your philanthropic support is being brought to life. St. Louis Children’s is bringing a new breakthrough treatment for sickle cell disease to children who are not candidates
for the only current cure available. As the largest sickle cell disease program in Missouri, we are grateful for this new and less invasive therapy. You will also get a glimpse into the work of one of our Washington University physicians in the Emergency Department as well as the Foundation Board of Trustees’ Chairman. We wouldn’t be where we are today as a hospital and Foundation without these two very dedicated individuals.
I hope you will be motivated by the amazing work being done at St. Louis Children’s Hospital. This year is going to be one for the record books — I can feel the energy as we ramp up our efforts for 2025. There are so many ways you can give back and help us do what’s right for kids. As always, we are grateful for our supporters and couldn’t do this without you.
Warm Regards,
Tanya L. Waskiewicz
Because of generous donations from people like you and companies like Gardner Capital, patients participated in Love Light, a festival to kick off the winter holidays featuring food, music and entertainment that ends with the lighting of the hospital’s holiday lights, and Snowflake Village, which provides the opportunity for families to “shop” free of charge for their children while in the hospital. In addition, a big thank-you to Amazon, who donates all the items available in our Holiday Shop for Kids, ensuring even our patients get to shop for their loved ones during the holiday season.
This past fall, St. Louis Children’s Hospital celebrated Halloween with spooky yet sweet — activities that brought smiles to children’s faces. Also, thanks to Spirit of Halloween and the Spirit of Children program, Spire, the St. Louis Blues and everyone who purchased a stuffed Halloween pal for patients spending this day in the hospital. Because of your support, we celebrated the spooky season in style!
Pedal the Cause announced its 2024 donation total with a celebratory check presentation after a rainy, yet fun, weekend of festivities. The events raised $5,204,913 for Siteman Cancer Center and Siteman Kids at St. Louis Children’s Hospital. Funding from vital partners like Pedal the Cause enables researchers to discover lifesaving treatments and cures for pediatric cancers and improve outcomes for kids and their families. This year’s contribution brings the total funds donated by Pedal the Cause over the past 15 years to more than $49.3 million.
Valentine’s Day at St. Louis Children’s was one filled with hearts, treats, admiration and words of encouragement. Thanks to generous donors, valentine-theme stuffed pals were hand-delivered to our patients on February 14 to spread some cheer. More than $4,700 was raised to benefit Camp Rhythm, a day and overnight camp for children with congenital or acquired heart defects, in honor of its 20th anniversary.
The 11th annual Play Date, the signature gala benefiting St. Louis Children’s Hospital, was held in November at the Four Seasons Hotel St. Louis. This event raised more than $540,000 for research being conducted by the Children’s Discovery Institute and featured the work of the St. Louis Children’s Sickle Cell Disease Program. The 2024 theme was Destination Discovery, and attendees went on an adventure through a perilous port town and jeopardizing jungle to find the treasure — the life-changing work being done at St. Louis Children’s.
In December, the St. Louis Blues hosted its Hockey Fights Cancer Night at Enterprise Center. The annual event, held in conjunction with the National Hockey League, raises money and awareness to support cancer research and those affected by cancer and their families.
Seven patients from Siteman Kids at St. Louis Children’s Hospital had the opportunity to participate in various “jobs” around Enterprise as part of this event, such as security officer, organist and intermission reporter.
New Treatment for Sickle Cell Patients
Is on the Horizon
Research at St. Louis Children’s is giving families hope — now and in the future
Often known as an invisible disease, sickle cell disease is among the most common — and devastating — genetically inherited conditions. An estimated 2,000 children are born in the United States with sickle cell disease each year. Children with the disease need routine care for their entire lives — lives that may sadly be cut short due to complications from this severe, chronic disease. WashU Medicine physician Allison King, MD, MPH, PhD, is working to change the trajectory for patients at St. Louis Children’s Hospital and beyond through her work at the Children’s Discovery Institute (CDI), a collaboration between St. Louis Children’s Hospital, its Foundation and WashU Medicine.
Sickle cell disease is a group of disorders affecting the red blood cells, causing debilitating pain and profound health risks. Children with the disease often develop anemia and have a greater risk for stroke and cognitive defects. These risks, along with pain and a higher risk
of infection, increase a child’s need for emotional and psychological support. Young patients and their families face barriers to care, gaps in treatment and a lack of access to resources.
Dr. King, a pediatric hematologist-oncologist who is part of the largest pediatric sickle cell disease program in Missouri located at Siteman Kids at St. Louis Children’s, is focused on research to provide treatment that modifies the course of the disease instead of only treating the symptoms. Sickle cell disease may never be eradicated, but as the Fred M. Saigh Distinguished Chair in Pediatric Research, Dr. King’s goal is to ensure that St. Louis Children’s and WashU Medicine lead the way in improving care and quality of life for young patients.
The only currently proven cure for those living with sickle cell disease is a stem cell transplant. The procedure is complex and lengthy, requiring chemotherapy to destroy the unhealthy red blood cells followed by weeks to months of hospitalization for recovery after the transplant.
Possible side effects include infections, transplant rejections, infertility and graft vs. host disease, in which the body’s immune system attacks the new cells. Results from many studies, including some from our own center, show that pediatric stem cell transplants from matched siblings offer about an 85% chance to cure the disease, compared to 70–80% from unmatched family members or unrelated donors. Fewer than 15% of children with sickle cell disease will have a matching sibling donor available, so alternative approaches are needed.
Thanks to Dr. King and her colleagues, a new donor-funded gene therapy is coming to St. Louis Children’s. Recently approved by the U.S. Food and Drug Administration (FDA), the treatment is labor intensive and requires patients to spend at least one month in the hospital. However, unlike a stem cell transplant, this new gene therapy uses the patient’s own cells and doesn’t require a donor match.
“The great thing is that with gene therapy, you don’t have to rely on someone else to give you those stem cells,” says Dr. King. “You can have your own stem cells be the source and get reprogrammed to not produce those sickle cells anymore. That’s groundbreaking.”
Meet Xander
As a typical teenage boy who enjoys anything to do with robotics, Xander likes eating sushi and staying up too late playing video games with his buddies. He is also a teenager living with sickle cell disease.
Xander’s parents learned of his diagnosis when he was approximately 3 months old. While he wasn’t exhibiting symptoms at the time, his parents decided that St. Louis Children’s Hospital was the best place to go for his treatment. This is where he met Dr. Allison King.
When Xander was very young, he participated in a clinical trial in which he was randomized to receive either the medication hydroxyurea or a placebo to see if the medication would prevent complications. He has been on this medication since the trial and has had relatively few significant complications from his disease.
While the future is unknown for how Xander’s body will continue to handle this disease, his medical team is beginning to prepare him for what his care will look like as he matures and explores going away to college after he completes high school.
The new donor-funded Center for Sickle Cell Disease within the CDI will be one of only a handful of institutions worldwide to serve as both a research center focused on sickle cell treatment and an innovation hub to address gaps in patient care in our community and beyond. If you would like to give a gift to support sickle cell research, visit StLouisChildrens.org/Give.
Helping Kids Access the Care They Need Closer to Home
St. Louis Children’s is committed to advocacy for child health beyond the hospital’s walls
Siblings Lyla and Kayden were both diagnosed with a rare disease that would benefit from more research to help shape statistics and remove the unknowns.
The St. Louis Children’s Hospital advocacy and outreach programs transform the hospital’s mission to do what’s right for kids into actionable plans involving community members, employees, medical staff, donors and families. Reaching beyond the hospital setting, Child Health Advocacy and Outreach programs deliver health-related resources and education to families and communities throughout the St. Louis region to help keep them healthy, safe and thriving.
Healthy Kids Express Asthma
With more than 7 million children across the United States diagnosed with asthma, one of the leading causes for emergency department visits, the Healthy Kids Express Asthma mobile unit delivers free asthma care education and resources to area schools for children and their families throughout the metro area.
Healthy Kids Express Dental
St. Louis children in need are smiling big healthy smiles thanks to St. Louis Children’s Hospital’s Healthy Kids Express – Dental Program and donor generosity. Children receive dental exams, professional teeth cleaning and fluoride treatments, and the team treats dental problems such as cavities and gingivitis. Sometimes a visit is exactly what’s needed to make better dental care a lifelong healthy habit. Because of donor support, a second Healthy Kids Express Dental mobile unit hit the streets in 2024.
Healthy Kids Express Diabetes
For kids living with diabetes, managing a chronic disease can be hard. Introduced in early May 2023, the program makes visits to schools throughout the St. Louis region to help students manage diabetes and prevent the disease. Removing barriers to diabetes care and other services helps address academic, social, emotional and physical support to ensure success.
Healthy Kids Express Screening
Today, more kids have a healthier and brighter future because of the generous support of the St. Louis Children’s Hospital Healthy Kids Express – Screening Program, which bridges the healthcare gap by partnering with local school districts, day care centers and Head Start programs to provide services such as hearing and vision screenings, lead and iron deficiency testing, immunizations, and height and weight checks.
Healthy Kids Healthy Minds
In place since 2017, Health Kids, Healthy Minds places full-time school nurses and mental health professionals in schools. The program addresses students’ physical and psychological needs, helps the school system by increasing the district’s nursing staff and provides convenient healthcare support to students, families and faculty.
Teen Outreach Program (TOP)
While teens strive to be independent, they sometimes still need a helping hand on their journey toward a healthy, well-prepared adulthood. TOP, which benefits at-risk students, concentrates on three essential goals: healthy behaviors, life skills and a sense of purpose. The program is offered during or after school hours, with individual schools adding program components that relate to their specific community needs.
Community Hubs
St. Louis Children’s Hospital provides a world-class choice for parents and caregivers seeking medical care for their children while also investing in children’s lives away from the hospital setting. Community hub events are hosted alongside partners to extend the reach of St. Louis Children’s into the community.
Child Health Advocacy and Outreach department programs are aimed at eliminating disparities in outcomes and access to care, and the team strives to provide care in the community and increase access through mobile units and virtual care and with embedded staff. The team is hopeful and thankful for donor funding that helps to improve the health, well-being and quality of life of the children and families served.
4,152 17,053 14,039 20,439 2020 2021 2022 2023
2023 by the Numbers
• 9,670 Healthy Kids, Healthy Minds clinic visits
• 7,369 students who received asthma services
• 2,402 virtual therapy sessions
• 1,519 TOP participants in 39 TOP clubs
• 1,461 dental exams
• 69 students who received diabetes care
If you would like to ensure more children are served through community programs, please visit StLouisChildrens.org/Give to donate today.
Left: Healthy Kids Express mobile units address the high demand for comprehensive care in medically underserved areas.
Thirty-two years ago the family of a little girl named Jessi received a phone call that would change their lives forever. Cellphones were not commonplace in the early 1990s, so families on the transplant list were required to carry a beeper, a wireless device that received and displayed messages. The beeper would notify them if they needed to contact the hospital. Jessi still remembers the day her beeper went off while her family was fishing. They were initially told it was a glitch, but an hour later, Jessi and her family were heading to St. Louis Children’s Hospital.
This same little girl is now the Guinness World Record holder as the longest-surviving double lung female transplant patient. When Jessi reflects on her surgery more than three decades ago, she becomes emotional talking about her donor, a blond-haired, 8-year-old boy named Phillip Brown who tragically passed away in the days before Jessi’s transplant. Jessi, who remains in contact with his family, made a promise that she would always talk about him and his love for video games and his family. She also made a promise that she would take care of her body and the second chance at life that she was given. Jessi was diagnosed with cystic fibrosis at the age of 4, and her family relocated to St. Louis from Texas specifically for the specialized care at St. Louis Children’s Hospital. By the time she was 11, she was very sick and in desperate need of a transplant. Doctors told Jessi’s family that they estimated she had about a week to live before she received her new lungs.
While her medical journey hasn’t been easy, Jessi credits her transplant success to a magical team of experts at St. Louis Children’s and a very supportive family. Jessi has seen several physicians over the years and she credits them with connecting her to other patients who have gone through a similar experience. Many of them still meet up regularly as adults.
Jessi has also become involved with the Transplant Games of America, which include more than 20 competitions for organ, eye and tissue recipients and living donors during a weeklong celebration. The event celebrates life, raises awareness and brings together a community of individuals who have been touched by the miracle of donation and transplantation. According to Jessi, a highlight of the
event is trading pins with others while hearing their stories. Jessi is happy that she can provide hope to others by sharing her story and she encourages others not to give up hope, no matter what statistics they may hear. This past year, Jessi participated in the Texas hold’em competition but says she lost quickly. She also participated in the cornhole competition, and while she hasn’t won a medal yet, she says she will keep trying.
Jessi is thankful for the brilliant and caring WashU Medicine physicians who are giving patients more time to spend with their families. Jessi’s own family chose St. Louis Children’s Hospital because of its expertise. The hospital has been at the forefront of pediatric organ transplantation for lung, heart, liver, kidney as well as stem cell transplant for years. The success of the program is due in part to the skilled teams of healthcare professionals and their close association with WashU Medicine. Since the program began, almost 1,900 transplants have been completed. Thanks to her experiences as a child and the success of her transplant, Jessi is filled with gratitude and is hopeful for what the future holds for her and her fellow organ recipients.
Left: Jessi proudly displays her Guinness World Records certificate.
Jessi, as a child, receiving medical attention from her nurse.
Phillip Brown
Showing Gratitude with Flying Colors
A grateful family supports art therapy to honor their daughter’s life
Galen and Candie honor daughter Kiara’s memory by hosting art supply drives that benefit art therapy at St. Louis Children’s Hospital.
If emotions were colors, it’s hard to say what color compassion might be. Or what color might represent kindness. But gratitude would be teal.
Teal was Kiara’s favorite color. Kiara’s parents, Galen and Candie, first took Kiara to a local emergency department near their home in West Plains, Missouri, to identify what was causing her to feel sick. In 2018, she was diagnosed with acute B-cell leukemia.
When it was clear that Kiara needed more specialized care, her doctor recommended the family go to St. Louis Children’s Hospital. “The ER doc told us he had been trained in St. Louis, and that’s where we should go to get the best care,” explained Candie. “He told us ‘You’re going to love everyone there.’ I thought he meant we’d love the doctors, but we love everyone. It’s not ‘nurses’ and ‘doctors’ — it’s relationships,” said Galen.
Those relationships made a big difference to the family throughout Kiara’s treatment. “Kiara loved people,” Galen said. “She loved to help others and she loved to do fun things. You couldn’t keep her in her room — she always wanted to be out at the nurses’ station.” When that was hard for Kiara, those people came to her.
Kiara had a special connection with Daphne, one of St. Louis Children’s Hospital’s art therapists. “The very first time they met, they just clicked,” explained Galen. “When Daphne spent time with Kiara, we would go down to the cafeteria. When we returned, you could tell that for Kiara, the art therapy was a game changer.”
Art therapy allows children to express their emotions, questions and experiences through the process of creating their own art. Therapists bring a variety of creative materials to inpatient rooms and provide a therapeutic environment for patients to reflect on their feelings about themselves and their medical journeys. The process of creation and the engagement with the art therapist improves mental and physical well-being, helps foster self-awareness, and cultivates emotional resilience, among other therapeutic goals.
After Kiara passed away in January 2020, Galen and Candie wanted to honor Kiara’s memory by celebrating her love of art and art therapy provided by Child Life Services at St. Louis Children’s Hospital. When her parents considered how to best celebrate Kiara’s life, and help other patients at St. Louis Children’s, they asked themselves what Kiara would want them to do. And the answer felt so clear: Ensure other children can benefit from art therapy.
So Galen and Candie began gathering art supplies. A lot of art supplies. Through community fundraisers, and with the support of friends who loved Kiara and those inspired by her life, they have gathered loads of creative goods. For the past four years, that has meant an entire SUV packed with everything from paint sets to special pens, markers and kits. Though Galen and Candie are used to driving with supplies filled to the brim — even tucked in between them — their goal this year was different. This year, they wanted to fill a U-Haul truck.
How much happiness does a vehicle packed with art supplies provide? “We were told it covers almost the entire year’s art therapy supply needs at the hospital,” said Galen.
Throughout Galen and Candie’s time with Kiara at St. Louis Children’s, one thing stood out most: love. “The doctor would come in on his day off just to check on Kiara,” explained Galen. “You don’t know the impact you’re going to have on someone. Let’s just say we came away with a lot of family.” If you would like to ensure more children are given the chance to just be kids, please visit StLouisChildrens.org/GetInvolved to learn how you can support our patients today.
The ability to express her emotions through art therapy and engage with her art therapist were game changers for Kiara.
Doing What’s Right for Kids
Courtney Landrum, host of The Courtney Show on 106.5 The ARCH, loves her community. And her community loves her! For the second year in a row, The Courtney Show has held its 12-hour radiothon in support of St. Louis Children’s Hospital, raising $53,420 to support the hospital’s mission to do what’s right for kids Courtney, who grew up in Belleville, Illinois, decided early on during a television station internship that news was not the right place for her. She then tried her hand at radio and fell in love. Thirty years later, she is still living her dream. Courtney says she has done radiothons in the past for various causes, but she loves meeting the kids from St. Louis Children’s Hospital. Courtney also gets a kick out of the shenanigans that her listeners propose. In 2023, she found herself singing a song on the radio for donations, which she laughs about still to this day. Courtney says this radiothon is perfect for St. Louis because it is a unique community full of people who want to give back. Of course, every event has highlights, but Courtney reflects on how captivated she was that each patient she met had such a unique personality, and it became clear pretty quickly that their medical journey had shaped them into confident, vivacious and strong individuals.
Annual Radiothon
Brings Community Together
The Courtney Show on 106.5 The ARCH supports children and their families
Others have also noticed the success of the radiothon. The Missouri Broadcasters Association awarded the show first place in the large-market community event category in 2024. Courtney credits her amazing radio team, Brando, Chris and Tim, and her supportive listeners, who are like a family, for this achievement. She adds that their audience has children, nieces, nephews and grandchildren so they can relate to the stories they hear during the show. Courtney loves being able to have fun at work every day. The radiothon is no exception. “At the beginning of the event, it feels like there is a big mountain to climb, but you get so much energy from the people and volunteers in the room,” Courtney concluded. The people, according to Courtney, are the best part of her job.
Help St. Louis Children’s Hospital and patients like Henry, Laila and Logan. Visit StLouisChildrens.org/Give to donate today.
From left to right: Brando Calrissian, Tim Convy and Courtney Landrum
12 hours
$53,420 raised
97 song requests for
85 different artists
213 gifts made online or by telephone
25 business plugs
50 shoutouts
1 call from St. Louis native comedian Kathleen Madigan
1 donation to not play 500 Miles by The Proclaimers for a year
11 donations of $1,000 or more
St. Louis Children’s patient Henry in the studio getting ready to share his story on air
St. Louis Children’s patient Logan and his sister, Nora
St. Louis Children’s patient Laila in the studio sharing her story with The Courtney Show
A Day in the Life of an Emergency Department
Physician
Injury prevention is vital to saving children’s lives in St. Louis, and this is how one advocate ensures she’s making a positive impact
WashU Medicine emergency medical physician Lindsey Clukies, MD, is no stranger to trauma. St. Louis pediatric hospitals led the nation in the number of children seen in the emergency department with a firearm injury, and Dr. Clukies hopes to reduce those numbers with firearm safety education.
After completing her residency and fellowship at St. Louis Children’s, Dr. Clukies chose to stay and is now an associate professor of pediatrics in the Division of Emergency Medicine at Washington University School of Medicine (WashU Medicine). She is also the associate trauma medical director at St. Louis Children’s Hospital, and her career focus and passion is pediatric trauma and pediatric injury prevention. In addition to firearm injury prevention and time spent helping patients in the ED, she works to prevent child death and injury due to unsafe sleep practices and unintentional ingestion poisoning. This is a day in her life.
Rise and Shine
6 a.m.
Wakes up, grabs coffee, and reviews email and trauma cases from the night before.
6:30 a.m.
Walks her three rescue dogs, makes her three young children breakfast and gets them ready to go to school.
8 a.m.
Drives to St. Louis Children’s Hospital.
Dr. Clukies is focused on serving the St. Louis community through her work in the Emergency Department.
Meetings and Office Time
9 a.m.
Sits in meetings with the trauma team to review patient cases, discuss patient care and identify trends.
11 a.m.
Meets with her smaller injury prevention group to discuss how to improve the hospital’s prevention tactics — anything from the firearm safe storage initiative to increasing Safety Stop referrals. The group also focuses on its upcoming injury prevention quality improvement projects, which are currently safe sleep, medication lock boxes and Narcan distribution.
1 p.m.
Takes a quick lunch break to recharge.
1:30 p.m.
Plans for upcoming research studies and works on her firearm safe storage trainee curriculum that she created as part of the Loeb Teaching Fellowship from WashU Medicine.
Home Life
3:30 p.m.
Walks to her children’s school to pick them up and walks them home.
4 p.m.
Has an afternoon snack or an early dinner and prepares her kids for their extracurricular activities.Takes them to baseball and hockey practice.
7:30 p.m.
Winds down with her kids for their bedtime routine. Reads them books and tucks them into bed.
8:30 p.m.
Takes a pre-shift nap.
10:30 p.m.
Heads to work for an action-packed night shift in the ED. A typical shift includes a wide range of patients, both in acuity and volume.
Night in the ED
11 p.m.
Starts the evening with a visit to a teenage patient who requires stitches after a sports-related injury and then moves to another room to provide sedation for a forearm fracture from an earlier fall on the monkey bars at school in an elementaryage patient.
1:15 a.m.
Gets word that a young patient requires an assessment for a potential head injury after
falling from a top bunk. She must make an informed decision as to whether the patient requires additional CT imaging. In this case, she speaks with the family, reassuring them that the best option is to keep the patient for observation. She makes a note to check back later to ensure the patient is stable enough to be discharged with supportive care.
2:45 a.m.
Meets with a member of the St. Louis Children’s 24/7 social work team on a child maltreatment case and discusses the disposition plan. Is the child sick enough to stay in the hospital? If not, is there a safe place for the child to be discharged to? The team proceeds to ensure the child stays as safe as possible with the potential for further investigation from the state and other government entities.
4:30 a.m.
Takes a quick moment with the pediatric residents to discuss several cases. Education is a large part of Dr. Clukies’ job, and she enjoys sharing her knowledge with others.
5 a.m.
Is notified that an early morning car accident is bringing several young patients to the ED by ambulance. The trauma bay is bustling as staff members, including Dr. Clukies, work quickly to ensure the children’s injuries are addressed to prevent further trauma. Unfortunately, motor vehicle accidents — including those from ATVs — are one of the most frequent causes of trauma injuries in the ED aside from firearms.
7 a.m.
Signs out at St. Louis Children’s and heads home to get some well-deserved sleep!
The St. Louis Children’s Hospital Emergency Department is an American College of Surgeons designated Pediatric Level 1 Trauma Center and receives approximately 58,000 visits annually. To support pediatric injury prevention, please visit StLouisChildrens.org/Give to donate today.
Dr. Clukies with her husband and three children.
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
A Gift for You
Values-Based Estate Planning with Thompson & Associates
In gratitude for your support, St. Louis Children’s Hospital Foundation partners with Thompson & Associates to offer values-based estate planning — a complimentary program to help you provide for the people and causes you love.
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