SCA7 Through My Eyes

Hi, I’m Mandee and I have a disease called SCA7 and I have a story to tell! Actually, I have lots and lots of stories to tell. SO many that it will take me years to tell them all. I want these stories told here on this blog for two reasons. First, so I can record them. Second, so I can share them.

The stories I want to share are all related to SCA7 (Spino Cellabellar Ataxia Type7). This disease is very unique. In fact, it is called an orphan disease because very few people have it. It is also unique because of the way it dramatically affects not just one person but many family members for generations.

These stories will not just be about me but also about my other family members that have SCA7 too. This disease is genetic, meaning that it is in your genes and therefore can be passed onto one’s children. There is a fifty percent chance of passing it on. The picture below shows those of us from my family, starting with my grandpa Paul and progressing from there, who have inherited SCA7. There are 10 of us, and all have already passed away from this disease except for my younger sister and me.  Because of modern medicine and advancements, we have been able to stop the passing of this disease onto the next generation. So this means, in our branch of the family, my sister and I are the last ones.

As far as I know, this disease does go back from my grandpa Paul to his father and grandfather. Which means that I do have distant relatives with SCA7. But for me and my story, it all starts with my grandpa Paul. I knew my grandpa well, along with those in the above picture. We are a close family, and we have done a lot together throughout my life, except for my Aunt Chris and Uncle Don who passed away at very young ages. Although, I was told many stories about them and their deaths by my mom and grandma. They hold a very special place in our family.

I feel an extra special bond with each of these family members. I treasure their examples and life stories. They give me strength and hope that even a life with SCA7 can still be really good. Their lives were full of great people, family, love, hope and faith. I think of them a lot and feel like they are around me at times, like they are my guardian angels. I also feel like they want me to share their stories.

It is difficult for me to put into words the effect that this disease has had on my life. I would use words like huge, dramatic and life changing. It has caused my soul to feel so much pain, anguish, fear and frustration, and it has broken my heart over and over again. It has played a large part in what has shaped me into the person I am today. Yet, through these experiences, I have learned some really valuable lessons. One of the many great blessings this life has to offer is knowledge. The world we live in has become very confusing as to what is truly good and right or truly bad and wrong. It is interesting how loosing abilities like walking, coordination and eyesight  along with suffering and death can help to bring into better focus what things bring lasting and real happiness, peace and joy.

The greatest blessing I have found through the experiences from this disease and seeing the examples of those before me is greater faith — faith in God and in His son Jesus Christ and faith that they love us so very much. We can trust them! This great truth that I have come to more fully know is the most valuable thing I possess. I am so grateful for the experiences and examples that I have had and seen that have strengthened my faith. Even though these experiences were and are hard, very hard, to go through, and worse…to see others that I love go through, it just increases my hope for that better place that has been promised us by the Lord.

So are you ready to hear some stories?

Well, first I need to explain what exactly SCA7 is and what it does to a person.

Coming very soon…stay tuned.

Next post:  What Is SCA7?