This is the story of my life. I spent many years afraid of sharing my whole truth. I have decided to share my story to raise awareness about my disease. I want to help other families with HD by sharing my story. Maybe it will give you the strength to speak your truth.
I grew up never having heard the word “Huntington’s Disease” in my home, much less understanding how it completely devastated the families that it touched. I was adopted and knew absolutely nothing about my birth family. That is until they sought me out in 1992 and I learned that my birth parents married and had other children. Then in 1998, about one year after getting married, I received a paralyzing phone call that my birth father had been diagnosed with HD and every sibling had a 50% chance of inheriting this disease. I chose to get the blood test and found out that I also carried the gene and would suffer the same tragic fate…death.
There is no specific treatment or cure for HD. It continues to shock me, that even in 2014, they still have no drug to slow the progress of this disease and nothing to cure it. My birth father died in 2006 at age 57. I am now beginning to see my own symptoms and slow decline. It is my personal goal to raise money and awareness about this under-publicized disease.
Since I received my diagnosis in January 1999, I have always wanted to put together a fundraiser to try to raise awareness and money for research.
Huntington’s Disease is a degenerative brain disease that strikes in mid-life, usually between the ages of 30-40. People lose their ability to walk, talk, and even feed themselves. Even though people may live for 10-20 years with this disease, their quality of life is taken from them. Scientists are still uncertain as to why the protein in our brains becomes toxic and kills our brain cells.
My biggest fear is not being there to take care of my family: Bob, Katie and Ryan. Our daughter was born with Cri-du-Chat Syndrome and will always live at home, requiring our care. It makes me so sad to not be there for her and Ryan. It makes tears spring to my eyes when I think of missing my children’s graduations, weddings, or even being a Grandma myself. It is my constant prayer that HD won’t be passed down to them. Together, I believe we can make this the last generation with Huntington’s Disease. I certainly want my own children to have “hope for their future” if they choose someday to have the blood test. Since I received my diagnosis in January 1999, I have always wanted to put together a fundraiser to try to raise awareness and money for research. Back then, I wasn’t ready to share my story and you can’t put together a successful fundraiser if you don’t share your story. For me, this is the year, to gather our family and friends together and share our journey.
We would be honored to have you attend The Bev Hartig Huntington’s Disease Foundation fund raising event in April of each year to Educate-Fund-Believe.
With Sincere Gratitude,
How You Can Help
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