Stories

My Grandpa, an Alien and Huntington’s disease

March 30, 2025

By Emma Wajswasser

I have always known my grandfather had Huntington’s disease. For me it was never this huge shocker. Since I was little, I was educated on the symptoms of the disease and how to treat people with Huntington’s. Don’t speak too fast and give them a minute to respond after asking a question, walk slowly and don’t cut them off. But a lot of people, especially doctors, don’t know how to deal with people who have Huntington’s disease. My grandpa, who is now at the end stages of the disease, was recently in hospital for a broken hip. The doctors assumed he was non-verbal, since he didn’t respond to questions right away. They tried to get him into a wheelchair, saying to my mother that him walking was “unsafe”, not understanding that his wobbly gait was just his baseline. Misunderstandings and people being uneducated about this disease, are what led me to write Bloopy the Alien Learns About Huntington’s Disease. It’s a children’s picture book, about a curious, young alien coming to earth and meeting my family. He meets my grandpa and asks me about his symptoms, “Why is he using a walker?” and “Why isn’t he answering my questions right away?”

This book is directed at younger audiences (3-8), but the messaging in it is great information for many adults, particularly doctors and nurses who are interacting with Huntington’s patients, who are unfamiliar with the disease. When I shared the book with my grandfather, he cried a little. When he turned each page he said, “Very good!” (Pretty much the only words he says now.) He was absolutely touched by it, and incredibly pleased about everything me and my mother (Erin Paterson) have been doing to advocate for the disease. I hope this book will reach people of all age groups, all over the world, and help educate everyone on how to treat people with Huntington’s disease.

You can learn more about Emma’s picture book HERE

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