Share |

Letter To The Editor - Huntington's Disease

 

Amanda Rinkel

Greenfield Mills

 

To the Editor:

Recently I received very exciting news! This news I believe will change my life forever.

I am very excited but yet very sad at the same time. You see, for the past year I have worked very hard to get my GED so I could apply to Moody Bible Institute in Chicago and this week the hard work paid off. This week I got my acceptance letter!

For many years now I have had a deep desire to help women in need. I have been able to do that through teaching women’s self defense in the area. I loved every minute of it, but yet my heart longed to do even more.

In November 2012 my mother and I were packaging pancake mix and listening to the radio when we found out that Moody Bible Institute was offering a BA degree in Ministry to victims of sexual exploitation. My heart was stirred; this is where I felt the Lord was calling me. I had never planned on going to college; I was fairly content working at my family’s business, Greenfield Mills, and teaching RAD (Rape Aggression Defense) on the side.

Hearing about this course awoke in my heart a longing to do even more to help women. A longing that has been in my heart for many years but that I never thought that I would be able to fulfill.

It also awoke sadness. You see my family counts on me to help in the family business. My mother, who has been my best friend, teacher, guidance counselor and rock through my 31 years of life, has a disease that does not have a cure. She has had to step out of the mill because she cannot keep her thoughts organized enough to stay focused on a task. She used to homeschool my brother and I, and then helped do the books in the family business.

My mom is a role model – she wasn’t scared of getting dirty. She would help do whatever needed to be done, whether it was cleaning up a huge pile of wheat or flour or encouraging me to seek the Lord when I was struggling with something. She loved canning and working in the garden. These were things that we did together as a family.

As I look back I realize that at times I didn’t make the most of the time that we had together. I saw these things as work that I didn’t really enjoy, but I also now realize that I love the memories of being able to work with my mother doing these things.

Gradually she has stopped doing a lot of these things because of Huntington’s Disease. This year she was forced to apply for disability. This disease destroys brain cells in the middle of the brain. It will gradually affect her emotions, her ability to walk, talk, eat, swallow and think. Eventually she will lose her ability to do all of these things and more.

 

 

 

 

So after getting this exciting news, I’m faced with the fact that going to college will bring many changes to my life. The hardest of these changes will be in knowing that I will not be able to spend as much time with my mother in the next few years as I would like to. I now see every minute that I have with her as precious and something to cherish. I am thankful that I will be only 2½ hours away, living in Chicago while going to college, and I plan on taking every opportunity to come home and spend time with my family whenever I can.

 Huntington’s Disease is hereditary and what is happening to my mom will someday happen to my brother and I because we tested gene positive in 2006.

I am happy that at this time neither of us is symptomatic. Having this disease in our family has made me realize how important every minute of life is, and how often we take our loved ones for granted.

As I plan to go off to college I want to use every minute I have wisely, because I don’t know when I will become symptomatic, or how much time I have left with my mother. I also want to encourage others to use their time wisely and to enjoy spending time with their loved ones while they can. For none of us know when something will happen that could hinder us from being able to spend time with them, whether it is a disease, accident or something else. Don’t wait till it’s too late, go and tell them what they mean to you.

If my story has touched your heart, would you please join us as we raise money to find a cure for Huntington’s Disease? My family at Greenfield Mills will be hosting a fundraising event on June 15 to raise money to further medical research for this disease.