We have some very exciting news from one of our warriors, Emilia!! She has successfully collaborated on a book geared towards explaining Crohn’s disease to children.
Emilia is the daughter of our Director – Clinical Trial Specialist. She was diagnosed with Crohn’s disease (CD) in 2017 at 8 years old. She is currently 12 years old and in middle school.
As a parent/caregiver of a chronically ill child, we are faced with many difficult questions, for which our little loves think we should know the answers to. “Why is this happening to me? Why can’t I be like other kids my age? How do I make the pain stop?” We parents often have these same thoughts and questions circling in our heads. “Why my child? How much more of this pain can they take? How can I help them to cope?” For Emilia, there hasn’t been any medication that stops the pain when it starts, but being close to mom helps. Sabrina (trying to find a glimmer of hope) has often told Emilia that perhaps Crohn’s was a special gift that would enable her to help other children.
In 2019, while at a pharmaceutical industry conference, Sabrina met Ryan, a director in marketing for a company named StudyKIK. He had written a children’s book on Alzheimer’s (Why Grandma Keeps Forgetting: An ALZ Story). Sabrina asked if StudyKIK would be authoring any books on CD and coincidentally they were, and he asked if Emilia would be interested in collaborating! Emilia was excited to say the least.
Emilia provided her personal experience for the initial draft of the book and then provided edits and comments thereafter. She would light up when there was a draft ready for her review. Emilia truly believes this book was the first step in her helping other children who suffer from CD.
Why Emilia Wasn’t Feeling Well: A Crohn’s Disease Story went to KickStarter in 2020 and was fully backed! The company printed and delivered copies to all who backed the campaign.
The book is now available on Amazon: CLICK HERE TO PURCHASE
We are so proud of Emilia and what she has accomplished so far, and can not wait to see what is next for her! Thank you to Ryan Williams and the StudyKIK team for giving her this opportunity!