Today’s post is (1) probably more personal than most posts I have shared or will share in the future, and (2) unrelated to the content that will usually appear on this blog.
Today is Rare Disease Awareness Day.
My family has a rare disease – so rare, in fact, that we do not have a specific name for it (only that it is a form of cerebral ataxia) and we have yet to find another family with the same symptoms. We do know what gene carries it and we know that gene is a dominant gene, meaning basically if one parent has it, each child has a 50/50 chance of also having it. My grandfather had it and unfortunately passed it to three of his five children. My mom and my uncle were spared, and I pray that the disease did not pass on to any of my generation. Ataxia is characterized by a decrease in one’s ability to control fine and gross motor movements. There are many, many forms and causes of ataxia, not all are genetic and they vary in severity. The symptoms associated with the ataxia in my family are very similar to Huntington’s Disease – severe decline in motor function as well as dementia as the disease progresses. The life expectancy is about 25 years after onset of the disease, which in my family occurs in the early to mid-30’s.
The reason I talk about that, besides the fact of that it IS Rare Disease Awareness Day, is that the disease is really a big reason that my grandma’s restaurant exists. You see, back in 1969, my grandfather progressed to the point with the disease that he could no longer work. With 5 children and a disabled husband to care for in a small community, grandma was faced with a choice- welfare or find a way to provide for her family. Grandma was a proud woman- she chose to open a pizza restaurant. She built a successful business from nothing and instilled pride and solid work ethic into each of her children. She gave people jobs who couldn’t find jobs anywhere else and fed anyone who came through the door, regardless of whether they were able to pay. Grandma passed away just over 10 years ago, but my uncle and my mom have continued the business.
Just over a year ago, a fire destroyed the building. It was a heartbreaking experience for my family. But, that pride and determination that my grandma always had was definitely instilled in my uncle and my mom. Instead of giving up and moving on with their lives, they decided to rebuild. The new building reopened just this week, and I couldn’t be more proud! The amazing new building and continued success of that business is truly a testament to the hard work that grandma put in towards her dream. A huge thank you to everyone who was able to help in any way, no matter how small!
So, I guess the moral of this story is if a woman with 5 children and a disabled husband back in the late sixties living in a small Indiana town can build a successful business from nothing, then what’s our excuse for not following our dreams? Most of the time, the dreams that we have will not be easy to accomplish, but they will be worth it- maybe not just for you but for your children and grandchildren. I know that if grandma hadn’t taken a leap of faith to start her own business, mom wouldn’t have went on to start her own business, and I wouldn’t have had those examples of encouragement to start my own business.
Love the pictures of the new place. Can’t wait to see it in person! It’s also great to know that you’re family’s heritage was passed on to you! (And I think you should write more posts like this!)
Blessings–
Dana
Thank you for sharing this, with I hope, a lot of people. I wish I could come visit, your restaurant.
Hugs,
Chris
I love you guys
I don’t know how I missed this last year, but I so glad that you have chosen to repost it now. Wonderful tribute!
Reblogged this on Rhythm Garden Music and commented:
Reblogging this in honor of this year’s Rare Disease Awareness Day as well as the 1 year anniversary of the of opening the restaurant in the new building. Confused as to how these two are connected? Read the blog to find out.
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