16 Apr Moments that Take the Cake: Shae’s Story
Born with achondroplasia, a form of short-limbed dwarfism, Shaedyn Chirumbolo McKee had her first surgery at just two months old near the family’s home in Cincinnati. But by the time Shae started 3rd grade, she was experiencing headaches and nausea so severe, she couldn’t ride in a car or attend school. Her frustration was evident as she recalled, “I loved being at school, I loved learning and being with my friends, so taking that away felt like I was losing my freedom.”
Shae’s mother Jennifer, a nurse in Cincinnati, knew that her daughter’s symptoms reflected those of hydrocephalus, fluid on the brain. Still, the family struggled to find answers and an effective treatment facility near their home in Cincinnati. They eventually found the Achondroplasia/Skeletal Dysplasia Center and Dr. Tsulee Chen, director of pediatric neurosurgery at Akron Children’s Hospital, right across the street from the Akron Ronald McDonald House.
Children and families from around the world come to Akron Children’s for neurological surgery, many returning regularly. Knowing that the Ronald McDonald House is steps away from the hospital is such a blessing for our families.
The Ronald McDonald House made it possible for Shae to have her parents, twin brother, older brother, and older sister all by her side when she needed them most. Jenn said, “It didn’t matter that Dr. Chen was in Akron and we were in Cincinnati because we were able to bring our whole family along to stay at the Ronald McDonald House, allowing us to remain united for Shae.”
During their time at the House, the family had a sense of normalcy and could enjoy activities together like watching their favorite shows or doing crafts. Looking back, they even have fond memories, like the activity when Shae’s dad tried to blow the yolk out of an egg and it exploded all over the table, giving them a much-needed laugh while Shae was in the hospital.
Shae was also in good hands. Dr. Chen performed surgery to insert a programmable shunt that would relieve the pressure on her spine and soon after, Shae returned to her everyday life, enjoying school and spending time with her friends and family.
In early 2023, however, Shae began experiencing the same symptoms of hydrocephalus as she had almost eight years earlier. The family returned to Akron, where Dr. Chen determined that another surgery was Shae’s best option. Dr. Chen removed the shunt and decompressed Shae’s spine, a similar surgery to the one she’d had as a baby.
When we returned to Akron, everything was already in motion. The House felt like home, we saw familiar faces. We created a routine that made me feel like I was in control. We could eat home-cooked meals like we would at home. There was someone there to listen to you when you just needed to step away, get a shower, debrief a little bit, and then go back and tackle it again.
One of Shae’s favorite memories of the Ronald McDonald House is from her last visit. She wanted to bake and decorate a cake. When Jenn laughingly told the Ronald McDonald House Manager about Shae’s wish, the House staff got to work, gathering ingredients and tools to take back to the hospital, where Shae mixed up her batter. Once the cake was cooked and cooled, it was wheeled into her room, where she got to work decorating it. “Everyone kept coming down the hall asking where a fresh cake had come from,” Shae said, “I told them the Ronald McDonald House let me make it.”
Shae is now a junior in high school, getting ready to graduate next year. She plans to attend college and pursue a career in neurosurgery or anesthesiology to help other families and kids get their lives back as Dr. Chen did for her. In her spare time, Shae loves to play lacrosse, visit museums, and spend time with her family and her many animals, including three dogs, two guinea pigs, a cat, a bunny, and chickens. Jenn tells us, “This is what the Ronald McDonald House is all about. Keeping families together and providing them with these little moments of joy and normalcy when they need it the most.”
Join us in supporting more families like Shaedyn’s. Your contributions give families of ill and injured children hope when and where they need it most.