Each year, SSM Health Cardinal Glennon Children’s Hospital makes a difference in the lives of thousands of kids dealing with illness and injury. For most of us, it’s easy to think of the patients by this number, but for the doctors, nurses, staff and especially the families, each patient is a person, and each story is one they live every day. It’s why fundraisers like the Glennon Card are so vital to the hospital’s mission. Saving dollars means saving lives in a very real sense.
One of Cardinal Glennon’s most inspiring patients is 4-year-old Keeva ‘Kiki’ Drye of DeSoto, Missouri. She has diastrophic dysplasia, a genetic condition that results in severe dwarfism, osteoarthritis, fused joints, club feet and hands, and a cleft palate. It’s caused by a mutation that affects cartilage and bone development. “Kiki has one of the most serious forms of the condition, but she is a trooper,” explains her mom, Jamie Drye. “She receives wonderful, personal care from the physicians, nurses and therapists at Cardinal Glennon.”
Right now, Kiki weighs 24 pounds and stands at 25 inches tall. “Her doctors say that until she can have spinal surgery, they don’t expect her to get much taller,” says Drye, who adopted Kiki and her sister, Katy. “They told us that most kids with the condition don’t grow to more than 3 feet.” Kiki also has severe digestive issues and complications caused by fetal alcohol syndrome, and a number of additional operations are in her future. She is a patient of Cardinal Glennon’s Complex Medical Care program, which helps coordinate her doctors, appointments and surgical procedures. Her SLUCare team includes otolaryngologist Dr. Dary Costa, orthopedist Dr. Aki Puryear, gastroenterologist Dr. Nisha Mangalat and pulmonologist Dr. Kurt Sobush. “They do everything they can to figure out new ways to help my daughter,” Drye says. “They have such big hearts.”
Drye describes the Complex Medical Care team as her backbone. “When the hospital first started the CMC program, they asked if I would like Kiki to be one of its first patients,” she says. “I quickly said yes because I wanted to do everything I could to help her.” Drye considered moving her family out of state at one point, but when it became clear what a devoted medical team she’d be leaving behind, she changed her mind. “I can’t imagine caring for Kiki without Cardinal Glennon,” she says. “All of her specialists love her so much. Her case is rare and complex, but they are always open-minded; they learn as much from her as we do from them. I think the best kind of doctor is someone who is highly knowledgeable but also teachable. Cardinal Glennon physicians are able to help my child all the more because of that.”
Despite Kiki’s physical challenges, she stays strong and determined, and Drye says it’s no coincidence that photos always seem to show her smiling. “Kiki came to me as a baby, and I fell in love with her sassy spirit right away,” she says. “At first, I was told she was probably terminal; others said that if she survived, she would never be able to walk. But her Cardinal Glennon doctors were different. Dr. Puryear said Kiki should be the one to decide what she feels like trying. ‘If she wants to walk, we’ll help her walk,’ he told us.” Now, she is making progress and can stand while holding onto things. She uses neck and back braces and other aids as well. “I call her my Princess Warrior,” her mother says. “She’s my heart and soul.”
Drye, who has a large family, says a number of personal setbacks have proven to her that Cardinal Glennon professionals value the caregiver as much as the patient. She says the team rallies around her in times of difficulty, and that bolsters her emotional strength and courage. “I had two surgeries myself not long ago, and staff members called, sent cards and checked in regularly,” she notes. “They were there for me as well as my daughter. That meant the world to us.”
On another occasion, Drye received some devastating personal news while at the hospital with Kiki, and the staff sensed immediately that she needed a caring shoulder. “One of the nurses saw me before and after I got the news, and without me saying anything, she knew what to do,” Drye explains. “She told our visitors that Kiki and I needed rest, and when everyone was gone, she came and sat with me. I was in shock and not even able to cry yet, but she took my hand and cried for me. Cardinal Glennon staff members really are a family unit. They don’t have to go out of their way, but they always do.”
Drye sees raising her children as a personal and spiritual calling, and she runs a charitable foundation to help other families as a way of giving back. “People tell me that Kiki is fortunate to have me as her mom, but I always reply that I’m the lucky one, and Cardinal Glennon is a big part of that,” she says. “Sometimes in life, you don’t realize what you need until you actually receive it.”
Each year, the Glennon Card shopping program raises funds for important medical programs at SSM Health Cardinal Glennon Children’s Hospital. By purchasing a card at glennoncard.org or a participating retailer, customers receive 20% off regular-priced merchandise at more than 345 stores and eateries Oct. 18 through 27. Pictured on the cover: Jamie and Glennon patient Kiki Drye. For more information, visit glennoncard.org.
Cover design by Julie Streiler | Cover photo by Colin Miller of Strauss Peyton Photography
Pictured at top: Dr. Aki Puryear adjusts Kiki’s brace.
Photo courtesy of SSM Health Cardinal Glennon Children’s Foundation
