Kira's Story

Who would have known that a trip to The Happiest Place on Earth would be the start of a lifelong journey? When my daughter Kira was 12 years old, she took a trip to Disney World with our family.  While on the vacation of a lifetime, she became ill with severe diarrhea and vomiting.  During the cruise, she was confined to her cabin and missed most of the activities on the ship. Once on land, Kira did not seem to get better. After returning home to Indiana, Kira went through the next 6-8 weeks with bouts of diarrhea, fever, vomiting, and exhaustion. By mid-December, the diarrhea and vomiting were happening regularly, and she was losing weight rapidly.  We were regulars in her pediatrician’s office with no relief and no answers. While getting an ultrasound, the radiologist showed us the inflammation in Kira’s body—the image looked like a Christmas tree. The radiologist asked if Crohn’s disease ran in the family. I couldn’t understand at the time why he was asking that question when the technician was looking at her appendix. After another trip to the pediatrician and continued weight loss, we were finally referred to Riley’s Children’s Hospital. 

After our first visit with the doctor, we instantly felt at ease and had hope for a diagnosis. Kira had an endoscopy and we finally had our answer –moderate-severe Crohn’s disease. Suddenly Kira had a whole new lifestyle, including a modified diet and steroids. Over the course of the next three months, the dosage of her steroid ratcheted up and she experienced all the side effects associated with it. Our family entered a very dark period with her new health concerns related to the steroid and the diagnosis of a chronic disease. Her inflammation continued to rage, and an oral medication was added to her routine. Still not in remission, her medication dosage was increased. Finally, Kira’s doctor recommended she try a biologic, and we were hopeful that she would finally get to remission.

While at the infusion center at Riley’s North we met a research nurse who approached us about a clinical trial. She spoke directly to Kira before making eye contact or acknowledging me, which made Kira feel like she had more control over the conversation. The research nurse took her time explaining the study and why Kira was a viable candidate, making her feel comfortable and valued as more than just a patient.  She also let Kira know that her participation was not required, and that she could say “no” at any point.  She spoke to Kira about being her own health advocate and suddenly Kira felt empowered and engaged. 

Kira declined to participate in the initial study the research nurse approached her about. However, after careful consideration and because of her confidence in the research nurse, Kira agreed to participate in a different two-year study.  She realized that her participation in the study could help others, and with this realization came better acceptance of her disease. Kira found purpose in her journey with Crohn’s and she abandoned her preconceived ideas of being a “guinea pig” and a statistic.  

Kira’s experience in a clinical trial has been one of empowerment. Participating in the study has allowed her to see she can impact not only her own health, but the future health of other IBD patients as well. Kira has a new outlook on clinical trials and has expressed a desire to participate in another trial – if it is right for her.

Hometown: LaPorte, Indiana