“I’m not your typical sick kid”
“Doctors would treat us differently because I had been to a few different hospitals across the country. They would shut us down when we said that we’d had to go to so many physicians for care. And that was really hard, because my parents are trying to do the best thing for me, and I’m only trying to be a normal teenager.”
In some ways, Savannah Cooper is an incredibly normal seventeen-year-old: she’s bubbly and fun, passionate about music and makeup, and loves goofing around with her best friend. But in other ways, she’s extraordinary. She’s a gifted dancer and an excellent student who’s about to attend one of the top musical theater programs in the country. She’s the founder of a 501(c)(3). She’s poised and confident beyond her years. And she’s chronically ill.
Savannah has battled mysterious symptoms all her life. She was diagnosed with Ehlers-Danlos Syndrome and Tethered Cord Syndrome at age seven, but continues to deal with chronic, nearly-constant kidney infections that can’t be completely controlled or pinpointed to a specific cause. She’s been treated at hospitals across the country as she and her family have looked for answers.
“Chronically ill and undiagnosed children live a life of uncertainty,” said Savannah. “It can sometimes feel like you’re just going around and around and you can’t get out of this black hole of sickness and appointments.”
Not long after her longtime doctor at Cincinnati Children’s Hospital retired, Savannah got seriously ill and needed to be admitted at Kentucky Children’s Hospital. She and her family were skeptical after being disappointed by previous experiences at other hospitals. But Savannah’s team at Kentucky Children’s Hospital, led by Dr. Sean McTigue, exceeded all expectations.
“I felt like he really listened to me, not only as a patient, but as a person, and made sure that I was able to have a normal life outside of this sickness that takes so much from me. And the nurses at UK are my favorite people—I love them all. They’ve been amazing, they always support me and encourage me.”
That support has allowed Savannah to continue dancing, which she’s been doing since age three, and performing in musical theater, which she’s been doing since she was eight. “It’s become like my own physical therapy. It’s taught me so much about my own body and making the choices that will keep me healthy. It’s kept me fit, and encouraged and motivated.”
Even through recurring infections and hospitalizations, Savannah has remained dedicated to her art, her relationships and her schoolwork. But she wanted to do more to help others facing the same frustrating situations she and her family had found themselves in time and time again.
“We decided that something needed to happen. So we started talking about patient advocacy, and I joined a patient advocacy board at Cincinnati Children’s. That inspired me to start my own foundation to do the same thing. I founded SavSTRONG to educate, empower and inspire chronically ill patients and their families.”
Through SavSTRONG, Savannah has been able to share her story and educate healthcare providers and the public about what chronically ill patients go through every day. “Kindness is key,” she said. “You never know what someone is going through.”
And for those going through chronic illness, she has another message: “It’s okay not to do everything like everyone else. But you’re a lot braver and stronger than most people even know.”