My grandpa inspired me to write a children’s book about Huntington’s

Emma Wajswasser, center, displays her book alongside her parents, Erin Paterson and Daniel Wajswasser. (Courtesy of Erin Paterson)

This is Emma Wajswasser’s story:

Ever since I was young, I was aware that my grandpa had Huntington’s disease. My parents always took opportunities to teach me about his symptoms and the condition in an age-appropriate manner. They wanted to make sure it wasn’t a big, scary family secret, so we were very open about it.

I realized that not a lot of families are like this. My mom didn’t even know Huntington’s ran in her family until she and my dad were trying to have children. That is one of the reasons I wrote “Bloopy the Alien Learns About Huntington’s Disease.” I wanted this children’s picture book to help parents and families teach their kids about the disease in a lighthearted, not-so-daunting way.

The book is about a curious alien who ventures to planet Earth. He meets my family, including my grandpa, and begins asking questions about his symptoms. In one scene, Bloopy wonders why Grandpa isn’t answering his questions right away. I explain to Bloopy that Grandpa’s mind just needs time to process information. The book deals with many questions children might have about family members with the disease, including walking funny, using a walker, slow response times, and chorea (uncontrolled movements).

Last month, I was invited to the HD Reach Education Day in North Carolina. The theme was storytelling, and my book was made into a play. I read the book to the children in attendance. We made costumes and backdrops and performed the play for the adults at the end of the day. After the play, one of the parents approached me, saying that this was her daughter’s first introduction to the disease. It makes me feel good to know that my book is having a positive effect on families.

In recognition of Huntington’s Disease Awareness Month in May, the Huntington’s Disease Community Spotlight campaign features a series of stories highlighting the real-life experiences of people affected by Huntington’s, written in their own words. Follow us on Facebook, Instagram, or X for more stories like this, using the hashtag #HDSpotlight, or read the full series.