There’s this boy, he calls me Mom and although he is now 23, he will always be my “baby.” Last year, my son was diagnosed with Huntington’s Disease (HD). Huntington’s disease is a hereditary, degenerative, and terminal brain disease. Huntington’s Disease (HD) slowly diminishes the affected individual’s ability to walk, talk, and reason. In time, the person with Huntington’s Disease relies completely upon others for their personal care.
HD affects the lives of entire families – emotionally, psychologically, socially, and economically. Huntington’s Disease affects males, females, and knows no ethnic or racial boundaries.
Every child of a person with Huntington’s Disease has a 50/50 chance of inheriting the fatal gene. So now, my granddaughter also has a fifty percent chance of inheriting this disease.
I have promised my son that he will not fight this fight alone. I am with him every step of the way.
I hosted my first Walk To End HD here in Illinois on May 12, 2012, and it was quite a success. With the help of friends and family, we were able to raise and donate a little over $14,000. All monies were sent to leading stem cell researcher Dr. Jan Nolta in California (EndHD.org). I am already planning and looking forward to our next event.
I will live my life looking for a cure, praying for strength and with hope in my heart. For my son, my granddaughter and everyone else who faces this devastating disease – I will fight.