Tim and I have some good friends who’s son has Huntington’s Disease. It will be the fourth year we have supported the poker run. I would like to extend the invitation to anyone who is interested. Even if you don’t have a bike; come on out and see these guys. If nothing else it’s just good times. Thanks Terry and Stacey for giving us the opportunity to be a part of this event.
4th Annual Poker Run Against Huntington’s Disease
Saturday, April 27, 2013 11:00am
Hooters of Hiram
5464 Wendy Bagwell Pkwy, Hiram, Georgia
Cory was diagnosed in April, shortly after his 15th b’day with HD. Cory was born 3 months premature, weighing only 2 pounds when he was born. No one thought he was going to make it. Several hours after his birth when they finally allowed me to see him, in his little incubator on a ventilator, feeding tube and numerous other machines, propped on his side, he was trying to push himself over. I knew at that moment that I had a little fighter on my hands and he was going to be fine. When he started school, he had some learning difficulties and a slight speech impairment. When Cory turned 8 yrs old, we noticed a facial droop and drastic decline in speech. After an MRI, we were told by a neurologist that Cory had Encephalopathy….a big word for degeneration of unknown reason. After some intensive speech therapy, Cory improved. At age 10, Cory started walking on his toes, again we took him to therapy and got braces and it improved. Then at age 14, he had another decline, this time affecting his posture,walking, speech, and his favorite thing, ability to play video games. Numerous neurologists and tests later, we ended up at Children’s Healthcare of Atlanta, again no one believed me that my son once played like other children, until they saw our home movies. On April 9th 2009, we were given the diagnosis. I cried. I screamed. Then I cried some more. As a mother we are supposed to kiss the hurt way. With HD, the hurt is more than you can imagine. So we promise, as long as there is breath in our bodies, we are going to fight this with Cory, for Cory and all the others affected by this.
Read more and see the video on 11alive