St. Louis Children's Hospital Magazine: Summer 2024
Editor: Janelle Ammel | Janelle.Ammel@bjc.org
Tanya L. Waskiewicz
Chief Development Officer, St. Louis Children’s Hospital
Dear Friends,
I hope you have enjoyed your summer! This time of year looks different for everyone, but there’s something so delightful about seeing kids playing in the sprinkler or the sound of the ice cream truck coming down the street. It’s also a hard time for our St. Louis Children’s Hospital families whose children are unable to enjoy the freedom and carefree spirit of summer due to their medical conditions. That’s why we try bring fun to our patients with the help of generous donors!
St. Louis Children’s kicked off the summer with Teen Prom for our inpatient and outpatient teens, sponsored by the Dunkin’ Joy in Childhood Foundation. To watch their faces as they wore fancy clothes, got their hair and makeup done and danced with their friends was incredible.
MilliporeSigma, the U.S. and Canada Life Science business of Merck KGaA, Darmstadt, Germany, sponsored the third annual STEM Week, allowing patients to engage in hands-on
learning opportunities in science, technology, engineering and mathematics. The Fourth of July Celebration, sponsored by Spire, included a carnival with games, a photo booth, button making, a magician, an airbrush tattoo artist and prizes!
Camps specifically for children with congenital or acquired heart defects, sickle cell disease and cerebral palsy were a huge success once again. Designed to ensure campers’ safety while helping them develop friendships with others facing the same challenges, kids attend at no cost thanks to generous donors like you. Camp Independence attendees are now preparing for St. Louis Children’s Tri My Best, an adaptive triathlon in September for kids with cerebral palsy and similar movement disorders.
As we head into the final months of the year, I encourage you to stay involved with St. Louis Children’s Hospital. Whether that’s attending our upcoming Day at Six Flags, volunteering at Tri My Best or learning more about legacy giving, there are endless opportunities to provide patients and their families with the support and services they so desperately need. And if you haven’t yet, I encourage you to make a gift. Every dollar we raise helps provide transformational care for kids in St. Louis and beyond. Thank you for your commitment to the more than 190,000 kids we serve each year.
Warm Regards,
Tanya L. Waskiewicz
The St. Louis Blues hosted their Blues for Kids Casino Night in March featuring an après ski theme. This year’s event raised $150,000 and highlighted St. Louis Children’s patient Lorenzo and his fight against cancer. Proceeds will be used to fund Newborn Intensive Care Unit (NICU) family engagement technology, which will allow families with a child in the NICU to see their baby on the bedside camera and allow staff to provide real-time updates to parents and caregivers.
As a Children’s Miracle Network partner, Club Car Wash is once again hosting Twelve Dollar Tuesdays. This annual campaign occurs every Tuesday at more than 30 locations in Missouri, Illinois, Kansas and Iowa. For singlewash customers, the MVP wash is discounted from $25 to $12 and $1 from each wash will be donated to Children’s Miracle Network.
The inaugural Wine Women & Shoes event benefiting St. Louis Children’s Hospital was held in May and hosted by the Take Part Foundation. Guests enjoyed a fashion show, wine tasting, designer shopping and dream closet raffle. The event raised approximately $100,000 to help St. Louis Children’s patients with rare diseases pay for genetic testing that is not covered by insurance.
In June, St. Louis Children’s Hospital Foundation celebrated the cherished relationships our patients have with their grandparents. Throughout the month, every dollar given through this campaign was doubled thanks to a $1 million matching gift from the Rick and Carol Short Family. Thank you to all of our donors who honored and celebrated the importance of grandparents.
The 23rd annual Joe Buck Golf Classic was held in June at Old Warson Country Club. Proceeds from the event, which included 144 golfers and more than 30 sponsors, will fund a state-of-the-art expansion of the Joe Buck Imaging Center at St. Louis Children’s Hospital. This year’s event raised a record-breaking $878,000 and highlighted St. Louis Children’s patient Kaitlin, who was diagnosed with distal spinal muscular atrophy, a rare genetic disease that causes loss of muscle movement.
It Takes a Village to Uncover Answers for Those Living with Previously Undiagnosed Genetic Conditions
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.
Local family uses determination to bring children and families together in person to share their stories and learn more
There are fewer than 20 children in the United States living with neonatal progeriod syndrome. St. Louis Children’s Hospital patient Gabby and her family are helping those children and their families come together and participate in a research project that hopes to uncover more about their genetic condition.
When Gabby was born in 2016, exome sequencing was just starting to be used to diagnose patients with rare, suspected genetic conditions. St. Louis Children’s was offering it in the Newborn Intensive Care Unit (NICU) for patients like Gabby, whose medical teams had high suspicions of genetic conditions. In Gabby’s case, exome sequencing was performed but did not reveal an answer for Gabby’s condition. However, Gabby and her parents were enrolled in a research study at Washington University School of Medicine. Through this study, researchers reanalyzed the exome data that included 20,000 genes, many of which have never been associated with a human disease or condition. Her research team found a candidate gene but only found one case report in medical literature that reported an infant with similar features and abnormalities in the same candidate gene. There was still so much uncertainty as to whether this gene was the explanation for Gabby’s condition.
4 St. Louis Children’s Hospital Foundation Magazine
Above: Gabby, St. Louis Children’s Hospital patient and her parents.
Right: Gabriel, who flew in with his family from Australia, at his appointment.
During this time, Gabby’s mom, Leslie, was diving into research of her own, using the internet to locate other families around the world whose children were exhibiting similar characteristics and were looking for answers. She found several families who were interested in joining the research study happening at the Children’s Discovery Institute, a partnership between St. Louis Children’s Hospital, its Foundation and Washington University School of Medicine, and provided them with the necessary information to connect with the research team.
Over time, six additional children with features of neonatal progeroid syndrome and genetic differences in POLR3A were identified through this research study. In 2018, the research group published their findings confirming that genetic differences in POLR3A cause neonatal progeroid syndrome. It took Gabby’s medical team seven months to discover what they thought was the candidate gene for Gabby’s condition and almost two years to definitively confirm that POLR3A caused neonatal progeroid syndrome.
With so few children with this rare genetic condition, there are scientific roadblocks to understanding this diagnosis. However, that doesn’t stop researchers from finding other ways to better understand the health challenges these children face. For example, what health concerns can be treated to improve and extend their lives? This question prompted the Macari family to gather the neonatal progeroid syndrome community at St. Louis Children’s to discover some common threads.
In the summer of 2023, the Neonatal Progeriod Foundation flew several children and their families to St. Louis to better characterize the natural history of NPS. Families gathered with Washington University School of Medicine physician Jennifer Wambach, MD, MS, who first met Gabby and her parents in the St. Louis Children’s NICU. There were five kids total, including Gabby. Two children came from other states in the U.S. and two others came all the way from Australia. Unfortunately, several others were unable to travel due to their health or because of the paperwork required to travel to the United States.
Each child was seen by specialists in six pediatric areas: cardiology, neurology, genetics, endocrinology, dentistry and physical therapy. By visiting each of these physicians or therapists, the researchers could collect clinical data to learn more about the medical conditions of each of these children, including noting similarities and differences for future research. However, one of the biggest goals was to gather the children and families together so they could share their own experiences with each other. For most of these children, this was the first time they’d met someone who shared their medical diagnosis.
A scientific symposium followed the clinical research day. Researchers from Washington University School of Medicine including Dr. Wambach and Head of Developmental Biology Lila Solnica-Krezel, PhD, spoke about their research and work with other physicians and scientists around the country who are working to understand this rare condition.
The goal is to repeat the clinical research day and scientific symposium in the summer of 2025 and compare the data to identify where further research may need to be conducted. Right now the team is focused on finding symptomatic therapies to help these children live longer, healthier lives. However, without help from the Macari family and their dedication to Gabby and St. Louis Children’s, this might have never been possible.
What is Neonatal Progeriod Syndrome?
Also known as Wiedemann-Rautenstrauch syndrome, neonatal progeroid syndrome is a rare genetic condition characterized by unique facial and physical features present at birth. The genetic mutation occurs in the POLR3A gene. When both parents carry a genetic difference in POLR3A, there is a 25% chance that their child will have this condition.
We hope you will join us as we continue to find answers for patients and their families. If you would like to help fund groundbreaking pediatric research, please visit StLouisChildrens.org/Give to donate today.
Empowering Our Community’s Most Vulnerable Youth
In healthcare, we often talk about what is going on inside the walls of the hospital. And despite the prosperity of most facilities, we know there are basic health needs of many youth in each community that still go unmet. Bringing essential healthcare beyond the hospital doors and into the community allows St. Louis Children’s Hospital to do what’s right for kids
A joint initiative between St. Louis Children’s Hospital and Washington University School of Medicine, the SPOT (Supporting Positive Outcomes for Teens) is a medical drop-in center serving youth ages 13–24. Designed to address behavioral health, social support and prevention needs in a youth-positive environment, the program’s ultimate goal is to eliminate common barriers to care access within St. Louis’ most underserved populations.
The SPOT opened its first Central West End location in 2008 and expanded in 2015 to create the first schoolbased health center in St. Louis County at Jennings High School. Since its inception, the SPOT has provided comprehensive healthcare resources to more than 20,000 youth throughout the region. Thanks to generous donor funding, all services at the SPOT are free of charge.
Confidential services include:
• Behavioral health needs screening
• Case management and resource referrals
• Counseling and psychiatry
• HIV and STI screening and treatment
• Medical and reproductive healthcare
• Primary care for youth in foster care
Who We Serve
Black (70%)
White (21%)
Other (6%)
(Asian, American Indian / Alaska Native)
Multiracial (3%) (more than one race)
The SPOT aims to ensure that it is partnering with the community for social justice and health and responding to their particular needs with an umbrella model of health and social services. This includes:
• Removing barriers that currently impede youth from seeking or obtaining health and prevention services
• Creating a youth-specific center separate from a child or adult clinic environment
• Combining needed health and social services into a single setting
• Engaging youth in all aspects of the program development and allowing opportunities for their leadership to be fostered
• Successfully linking youth to the existing healthcare system by addressing and eliminating specific barriers
The SPOT continues to promote a culture of safety, trust and respect while allowing youth to receive the healthcare they need. However, without funding from the St. Louis Children’s Hospital Foundation, the SPOT would be unable to continue its much-needed work in the community.
The SPOT counseling staff is trained to assist with a range of areas, such as depression, anxiety, family and dating relationships and traumatic experiences.
“The SPOT has changed my life in the best way and I am forever grateful.”
- Anonymous
We hope you will join us as we fight health disparities in the St. Louis region. If you would like to help increase access to compassionate, equity-oriented care, please visit StLouisChildrens.org/Give to donate today.
Question & Answer
One patient discusses his life-changing experience with now-retired, long-term neurosurgeon
Washington University neurosurgeon T.S. Park, MD, worked at St. Louis Children’s for more than 35 years and announced his retirement in early 2024. During his time at St. Louis Children’s, he pioneered a procedure called selective dorsal rhizotomy (SDR) to help kids with cerebral palsy go from limited mobility to walking, running and even playing sports. He performed more than 5,323 SDR surgeries in the last 35 years, with patients traveling from more than 86 countries and 48 states in the U.S. to see Dr. Park.
Many of the families that come to Dr. Park have seen numerous other specialists, and their kids have already endured multiple surgeries. For Alex Palanza, now 30 years old, Dr. Park was his chance to have a better life.
Q: You call Florida home, so how did your family learn about Dr. Park?
A: There were several kids like me at the place where I did therapy. One of the girls had the surgery, and she was in a study group. My parents learned about him that way. I think there were three of us who all attended the same facility who ended up becoming patients of Dr. Park.
Q: What was it like meeting him for the first time in May 1999?
A: You know, at the time a lot of the doctors here in Florida thought the surgery was a bad idea and had really negative things to say. But we went out to St. Louis and I remember Dr. Park coming into the room and he said, “Trust me, you’re in good hands.” At that point, my parents knew it was the right decision.
Q: You had the SDR surgery when you were 5 years old. What does it mean to you now?
A: As an adult looking back, it’s just really special. You learn so much and gain so much knowledge from Dr. Park, not only about the cerebral palsy and how to manage it, but I also learned a lot about myself. I learned a lot of different life skills, like discipline, toughness and dedication. Dr. Park held the kids and families to a high standard and he expected those he worked with to have the same standards as well. I think that’s why I’ve been so successful as an adult.
Q: You’ve become a donor to St. Louis Children’s Hospital. Why did you want to give back?
A: Because of all Dr. Park had given me and the experience I had with him, I thought it would be cool to help other families do the same. I wanted the same people in the same situations to experience Dr. Park. His knowledge, expertise and skill are first-class.
Q: What do you want others to know about Dr. Park and your experience with St. Louis Children’s Hospital?
A: He is truly the best in the world. If they had a hall of fame for doctors he would definitely be in it. He gives you 100% of his attention. I can send him an email and he’ll respond. Just to have that resource is incredible. To be able to help you while you’re there is one thing, but even after you leave the program he’s there to support you. I try not to bother him too much now, but maybe once he retires I’ll bother him to come play some golf with me. I remember going back to see him five or six years ago. I was like 24 or 25. He told me if I didn’t have that surgery then, I would have been paralyzed at this point. That’s why he really means a lot to me.
Left: Alex as a child
Right: Dr. Park (left) and Alex (right) have stayed in touch since Alex’s surgery 25 years ago.
A Cause Worth Celebrating : Pedal the Cause Turns 15!
Cycling event generates critical funding for cancer research
Pedal the Cause is celebrating its 15th year of raising critical funds for adult and pediatric cancer research with a weekend full of exciting cycling and community events. This year’s event will take place September 21 and 22 at the Family Arena in St. Charles, a new location for the event’s activities. The venue provides brand-new courses for riders of all skill levels. The event also hosts activities for non-cyclists, including spinning, a two-course Kids Challenge, Taste the Cause and the Inspirational Program held Saturday evening. If supporters are unable to attend ride weekend, there are options to participate through at-home virtual fundraising activities or you can simply donate knowing 100% your gift will fund cancer research.
Since 2010, the cycling event has provided a way for St. Louisans to join the fight against cancer, raising more than $45.8 million to fund innovative cancer research. Pedal the Cause is one of the top ten largest causerelated cycling events in the country. One hundred percent of the funds raised support cancer research at Siteman Cancer Center and Siteman Kids at St. Louis Children’s Hospital, producing new treatments for patients in our community and around the world.
Pedal the Cause has funded 52 pediatric cancer research projects, providing hope to children like Elsa. Battling acute myeloid leukemia (AML) since the age of 5, Elsa is now 14 years old and has undergone three lifesaving stem cell transplants. Elsa, our Pedal the Cause patient ambassador, is enjoying being healthy enough to finish eighth grade and is looking forward to learning how to play golf this summer. Her family says this would not be possible without the funding for cancer research, cancer discovery grants and clinical translational care producing groundbreaking treatments, clinical trials and early detection.
In 2023, Pedal the Cause raised $5,003,916 — a recordbreaker to commemorate the organization’s 14 years! Join the St. Louis Children’s Hospital Pedal the Cause team and help raise funds for critical cancer research to bring us, and kids like Elsa, closer to the day we live in a world without this disease. Every single dollar raised remains in St. Louis, funding research at Siteman Kids at St. Louis Children’s Hospital and Siteman Cancer Center. Visit StLouisChildrens.org/Pedal to register or donate today.
Elsa, our 2024 Pedal the Cause patient ambassador.
Navigating healthcare can be challenging. That’s why so many families rely on St. Louis Children’s Hospital’s Center for Families, which is now 100% funded by the Foundation.
Families Come First
Providing patients and families at St. Louis Children’s Hospital with a home away from home creates a sense of normalcy
The Center for Families (the Center) provides collaborative, compassionate and supportive family resources to help families navigate their healthcare experience. The focus is to meet families where they are in their healthcare journey. Recognizing that families are coming in more vulnerable, stressed and facing more urgent situations than ever, the donor-funded Center is open 24/7, 365 days a year to assist.
The Center’s refrigerator and freezer are stocked with nutritious, grab-and-go snacks and drinks. Baskets of chips, cookies, cereal, granola bars, macaroni and cheese and more sit on the counter. The Center is known for having the best coffee, tea and hot chocolate! It would not be a “home away from home” without the occasional celebratory treat.
Best of all, families are simply told to help themselves when they come in.
St. Louis Children’s patient families utilize the business center to keep their lives running while inside the hospital walls.
An increasing number of outpatient families bring their medically complex children for all-day appointments, making the drive from hours away to receive specialized care. The number of visits from families whose children are undergoing surgery in the hospital has also increased, with the Center supporting very anxious caregivers and families during hours-long surgeries. It’s also an invaluable resource to families whose child has been transported to St. Louis Children’s Hospital and they arrive completely unprepared.
For families who are caught off guard and make the trip unprepared, the Center provides items such as laundry detergent, deodorant, soap, feminine hygiene products, combs, toothbrushes and toothpaste, hand lotion and hair dryers. A quiet room allows families to decompress from the stressors of being bedside.
Services provided through the Center are multifaceted and continue to expand. In the Center, medical librarians and pediatric nurses fulfill requests for trustworthy medical information for parents, patients and the public. Families can also find information about local and national support groups for medical conditions and health information resources including educational books, videos and iPads to borrow to view online resources at their child’s bedside.
The Center also provides business center services for patients and their families, who must juggle work and insurance providers while focusing on their child’s care. Many parents and caregivers must continue to work while their child is a patient because their financial or employment situation does not allow them to take time away to focus on their child.
Our Center’s services continue to respond and grow to meet families where they are. And, with an increasing demand for education, information and assistance, our Center for Families remains an essential service at our hospital.
Family Visits
2019 (73,267)
2020 (64,848)
2021 (25,615)
2022 (84,776)
2023 (120,414)
2023 Statistics
• 17,171 patient families served
• 10,633 overnight visits
• 1,133 families provided clothing due to emergency situations
• 18,368 family visits to the laundry room
• 5,896 families provided toiletries
• 15 food access spaces operated by the Center
If you would like to ensure more resources are available for patient families, visit StLouisChildrens.org/Give to donate today.
Stronger Together
Elevating awareness to honor family
Passionate about supporting sickle cell disease research, Sharon Shahid is proud to be a donor to St. Louis Children’s Hospital.
The passion to give started decades ago when Sharon Shahid, who grew up in St. Louis, witnessed her cousin Renee struggle with the effects of sickle cell disease. Sharon fondly recalls memories of playing with cousins, but unfortunately, Renee was unable to join in on the fun because any stress on her body could send her into a crisis. When these sickle cell crises did occur, she would spend time at St. Louis Children’s Hospital. It still upsets Sharon today when she reflects on how difficult that must have been for Renee and her parents.
When Renee passed away the week before the tragic events of September 11, 2001, Sharon, who spent most of her adult life in Washington, D.C., was unable to fly back for Renee’s funeral on September 12. She was heartbroken. Their very large family attempted to establish a scholarship in Renee’s honor but ran into roadblocks. Sharon still felt compelled to honor Renee’s memory and became a donor to St. Louis Children’s Hospital to support the treatments and research of sickle cell disease.
Fast-forward to 2020, when COVID-19 was changing lives all over the world. Sharon felt unsettled as she was isolated in a city away from her family. She was unable to see her mother in person for more than a year, and it was a time when many people were forced to think about mortality and their legacy. Sharon decided to not only update her will but to explore ways to give back to places that transformed her life. She wanted to give back to the institutions that gave so much to her as a child and to a city where many of her nieces and nephews were growing up. During this reflection, she couldn’t help but think of her cousin Renee and her time at St. Louis Children’s Hospital. Sharon contacted St. Louis Children’s Hospital Foundation and participated in the complimentary estate planning consultation the Foundation offers through Thompson & Associates. After a few virtual meetings with consultant Michael Geis, Sharon decided to make St. Louis Children’s Hospital a beneficiary of her 401(k) retirement plan.
Sharon, a former writer and editor for USA Today and current museum editor, writer and consultant, doesn’t typically like to talk about money, but going through the process with Thompson & Associates made her feel at ease. Estate planning is personal and can be scary, but Sharon says Michael was warm and understanding as they worked through a plan to donate what she could to an institution that did so much to keep her cousin healthy and living for as long as possible. “I always thought only millionaires could leave this type of legacy, but I learned during the planning process that anyone can make generous gifts with proper planning,” said Sharon. Having grown up in a working-class family in the city of St. Louis, she is grateful that with education she was able to expand her horizons and now be in a position to give back and honor Renee’s memory.
“I always thought only millionaires could leave this type of legacy, but I learned during the planning process that anyone can make generous gifts with proper planning.” Sharon Shahid
Sharon selected St. Louis Children’s for her planned gift because of their commitment to advances in sickle cell research, and she hopes to help other children suffering from this life-altering disease. She is confident that with advanced research and treatments, kids diagnosed today will not have to go through the same suffering that Renee did many decades ago.
With a planned gift to St. Louis Children’s, you can achieve your financial and personal goals while making an impact on the lives of children fighting life-threatening diseases. Visit StLouisChildrensLegacy.org to make St. Louis Children’s Hospital part of your giving plans.
Renee Boyd Eddins was Sharon Shahid’s cousin and inspiration for her support of St. Louis Children’s Hospital.
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
Double Your Donation
Did you know your company could make your gift go even further? With the help of your employer, your gift to St. Louis Children’s Hospital may be doubled or even tripled! Visit StLouisChildrens.org/DoubleYourDonation or scan the QR Code to see if your company will match your donation and to access the forms, guidelines and instructions you need to submit a matching gift.
Learn more by visiting StLouisChildrens.org/DoubleYourDonation
