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  • Writer's picturelkotrba

Huntington’s Disease – memories from my childhood

During the spring of my fourth grade year, I learned that my mom had this thing called Huntington’s Disease (HD). I very clearly remember my dad telling my teacher, Mrs. Bjerk, all about it. I also remember my siblings and me sitting in the office of a counselor in Grand Forks, ND, to hear about it. These are not typical fourth grade memories.

In fifth grade, I had some friends over after school one day. A friend had gone downstairs to get something to drink and came back upstairs and mentioned how “weird” my mom was; I didn’t know how to respond. In seventh grade I had to take a cooking class as part of a “beyond the classroom” immersion program at school. This was a two week course that only juniors and seniors were allowed to take, but because it looked like I may have to do a lot of cooking at home after my mom’s death, I was encouraged to take it. Some people made fun of me and I felt awkward being around students that were four and five years older than me.

My mom was placed in a nursing home the Tuesday after Labor Day of my eighth grade year. I remember having to miss volleyball practice that day. I spent much of my eighth grade year visiting my mom in the nursing home with my dad. Mom died on February 22, 1989. To this day, I cannot walk into that nursing home without throwing up; the smell brings everything back in an instant. The last time I tried was about four years ago. I don’t think I will try again.

To be honest, I don’t have many memories of my mom being well. Although she was alive, HD stole her from us long before her death. HD is defined as “an inherited disease that causes the progressive breakdown (degeneration) of nerve cells in the brain. Huntington’s Disease has a broad impact on a person's functional abilities and usually results in movement, thinking (cognitive) and psychiatric disorders”. More commonly, those who have watched a loved one with HD or worked with those with HD describe it as a combination of Parkinson’s, Multiple Sclerosis, and Alzheimer’s Disease. Typically, HD presents itself between 30-45 years of age. Approximately 200,000 individuals are affected with HD each year. The disease takes too many angels from us when they are in the prime of their lives.

The sheep we are raising at Harvest Hope Farm are “special sheep”. Initially, they were brought on to help teach children and adults about sustainable food resources and environmental stewardship. However, I never knew I could eventually love sheep so much! These “special sheep” bring hope to many who have experienced the effects of HD in themselves or their loved ones. Being at risk for HD myself, I have experienced this hope first-hand. For the first time since fourth grade, I don’t worry about HD on a daily basis. For the first time, I truly believe there is hope for a cure. For the first time, I am able to share that hope with others - both near and far - that I didn’t have for myself until recently. It is truly amazing that sheep can bring that incredible hope to us.

Today, as we prepare for our first Harvest Hope Farm fundraising event, scheduled for Friday September 21st, I ask for you to join us in having Hope for a Cure for Huntington’s Disease. We humbly ask for your presence on the farm that evening from 5-8pm. Join us for a casual dinner outdoors, silent auction, lamb feed, photo booth, bake sale, kids activities and of course, to meet the sheep and our beloved donkey, Gus! This event will be an opportunity to learn about the research our sheep are involved with as we work with Shephard’s Gift for GM1. Come out and see our gardens that have been raised by 17 amazing kids attending our Harvesting Hope for Others Farm Camp. Learn about our mission and experience a bit of farm life.

For those of you we already know, we are excited to see you again. For our new friends, it is nice to meet you. To all, Welcome to the Farm! Relax, visit, feed the sheep, sit back and stay a while. We are glad you are here! Thank you for joining us in our mission to enhance hope in others!

For more information about Harvest Hope Farm and the fundraiser, please visit Follow us on Facebook and Instagram @harvesthopefarm


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