Meet Grace K., Parent Mentor at Akron Children's
Grace's Story
In July of 2012, my daughter, Amanda (who at the time was 13), was diagnosed with Eosinophilic Esophagitis. Since birth Amanda had experienced episodes of reflux, stomach aches, vomiting, low weight, among other things, but the symptoms were never consistent, and never seemed to relate to anything specific she was eating. We attributed the stomach aches to being a preemie or from anxiety because she was extremely shy and struggled with reading so school was scary for her. Fast forward to late spring of 2012 when Amanda’s heartburn was so bad that is radiated to her back. We decided it has to be something besides anxiety so made an appointment with Gastroenterology. She ended having an upper endoscopy and found out she had a very high Eosinophilic count in her esophagus. After continued PPI, steroids and elimination diet of 2 months, Amanda was rescoped and her counts were zero! We began reintroducing foods to determine what she was allergic to. As she grows her allergies change and she is now out of remission trying to figure out her new allergies.
This diagnosis led to other diagnosis like Ehlers-Danlos, Acrocyanosis, Iron-Deficient Anemia, ADHA, and even Dyslexia.
Amanda has 1 older and 2 younger brothers, and 2 of them share some of the same issues. We love Akron Children's and continue to support its efforts to save lives. I am part of the Eosinophilic Esophagitis Fundraising and Awareness Committee at Akron Children’s to help raise money for research and to educate others about the disease.
I look forward to meeting you and promise to offer any support I can.
Grace is a parent mentor for these conditions: ADHD, Dyslexia, , Iron-Deficiency Anemia.
Grace is a mentor for these care services: Gastroenterology, Mental Health
