DONAHUE FAMILY
This Spotlight appeared in our April 2024 newsletter.
As soon as seven-year-old Teaguen Donahue was born, her family noticed unusual bleeding and bruising that was hard to manage. Shortly after her first birthday, when she had an accident that caused prolonged mouth bleeding that got doctors attention, the family was finally given an explanation: Type 2A von Willebrand disease.
Searching for answers and ways to help their daughter, the Donahue’s tried to learn everything they could about Teaguen’s rare condition. They noticed that most sources of knowledge were geared toward adult learners, and struggled to find educational tools to explain what VWD was in ways their daughter could understand. “We got the idea to write a children’s book about VWD because there was really no literature available for kids to read about this disease,” says Cortni Donahue, Teaguen’s mother. “As a family of educators, we knew the need for children to hear and know about their disorder, but we also knew that parents/caregivers that had just found out their child was diagnosed with VWD had a need to know as well.” The family decided to face the problem head-on. They wrote the book themselves.
Fun Facts About a von Willebrand Warrior is a dual reader, designed for children and their parents or caretakers to read together. The story follows Teaguen and her Granna as they take a trip to the zoo and learn “fun facts” about the animals. Along the way, Teaguen also becomes curious about herself, asking “What are some fun facts about me?”
Throughout the rest of the book, children learn what VWD is and how it will affect their life, with Teaguen’s personal story as a guide. Alongside this text, there is in-depth discussion of these topics and resources to explore for adults. In this way, children and their loved ones can enjoy the book together and both learn something new.
Since the initial idea, it took two years for the book to be published. Cortni says the first year was spent “jumping in” to the book writing process, while the second year brought the challenge of editing and finding someone to publish the book. After being referred to the Foundation, the Donahues not only found a partner for publication but a lifelong community as well!
The family attended their first VWD Connect Conference in 2023. Through active participation in sessions (and karaoke!) they quickly became beloved members.
“At my first conference, I met one of my very best friends who I’m able to bounce ideas off of, ask advice from, and receive support from. I am in awe of the magnitude of joy, love, and connection that my family experienced at our first VWD Connect conference,” Cortni says of the experience. “While there and after leaving, we felt seen, heard, understood, valued, cared for, and loved.”
