Faces of HD

Meet Rosalie Boers — my Aunt Rose.

As a little girl, I was always hanging out with my cousins and Aunt Rose. She didn’t work outside the home so it was the place to be for me and all the neighborhood kids. Summers were spent at our family cottage in bathing suits from morning to night. Christmas mornings Aunt Rose made the best cinnamon toast ever. Rose’s Mom, Grandma Ruth was often around. As I got a little older, we all noticed that Grandma Ruth would be wiggling  and rambling on at which point her husband, Doc, would take her home. Often I would wonder if Grandma Ruth had too much to drink.  Then she was gone.

For years we continued to hang out with Aunt Rose. Her four children became some of my best friends. We grew up, started families of our own and Aunt Rose started wiggling. I’m not sure when the word Huntington’s was first spoken in our family, but I started to lose my Aunt. Cared for by family, then assisted living, finally unable to care for herself she spent her last years in a nursing home. At family gatherings when she was there, she could remember every name of anyone that had ever been in her life.

At her packed funeral her grandchildren talked about Grandma Rosie and caring for her with Huntington’s. I will always regret not standing up and speaking, for so many there, about my young, beautiful, funny Aunt Rose.

Genetically my family cannot get HD, but we have Huntington’s. People we love have Huntington’s. Every year we have a Enduro Car Race for the Cure. We want to raise awareness of HD along with money. We want to put faces with Huntington’s. It does not only affect the ones with HD, but all of us. My family will continue to talk about Huntington’s, search for treatment, pray for a cure, take care of each other. I will tell everyone I know about my wonderful Aunt Rose, and maybe some Christmas morning I’ll get that toast receipe right.

— Gay Klepper Deering.