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Our rainbow baby and missing puzzle piece, Miss Kenley, was born on April 19th 2021. From the moment Kenley was born, I knew something was wrong – mother’s intuition, I guess. It felt like Kenley was constantly sick and we lived at the pediatrician’s office. She went to every specialist and underwent numerous tests, pokes, hospital stays, and we left with nothing other than, ‘She has severe acid reflux.’ November 2022 is when everything in our lives would forever be changed. Kenley began to have numerous seizures daily. I was
frantically trying to figure out what was happening to my child and why all while being tossed around from specialist to specialist.

I was told, in order to see a neurologist, I was going to have to wait three months. I was not taking that answer. That’s when, by the grace of God, a friend gave me contact information for a neurologist in our area. He agreed to see us the next day. We were told on November 23rd, 2022, Kenley had epilepsy and needed an EEG as soon as possible. We went in on December 6th to Rainbow Babies downtown for the EEG, and I will forever remember Dr. Wiznitzer. He was the neurologist who was working on the epilepsy floor that day. He was reviewing Kenley’s medical history with us and stopped when I mentioned she had “white patches” all over her body. He told us she needs an MRI immediately.

December 22nd 2022, right before Christmas, is when we went in for Kenley’s MRI of her brain, which would turn our entire world upside down. We were told our daughter had a rare genetic disease called Tuberous Sclerosis Complex. TSC forms benign tumors in the brain and several areas of the body including the spinal cord, nerves, eyes, lungs, heart, kidneys, and skin. TSC also is associated with a wide range of behavioral, psychiatric, intellectual, scholastic, and psychosocial challenges that are very common. TSC currently has no cure. Kenley currently has tumors on her brain, which are closely monitored. We routinely have MRIs of her brain every three months to keep a close eye on the growth of the tumors. She has a TSC clinic that she attends yearly with roughly six specialists at once. We attend speech therapy and try to stay one step ahead of her so she doesn’t fall behind. Despite daily medications to control seizures and all the monthly appointments and every other month hospital stays Kenley is put through, you would never know. She is the funniest little girl. She loves to play pretend with her baby dolls, dress up in one of her costumes with her big sister, be outside covered in dirt, or riding her dinosaur power-wheels. With TSC and epilepsy, you truly never know what tomorrow is going to bring, and we’re just so thankful that she’s here, and count our blessings every day with her because we know tomorrow could change in a second with her. If you meet Kenley, you will leave laughing and with a smile guaranteed.

TEAM Kenley


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