Generations of Hope Ranch Camp

HD Lighthouse Contributing Editor's Comment: Mice with the expanded Huntington's disease(HD) gene and in a enriched environment do much better than deprived litter mates. The same is likely true for humans with HD.

To treat HD is to stimulate the growth of new brain cells and then to give the new cells fun things to do. You will find all this in the enriched environment of a ranch. --Jerry
Posted to the HDL: 04 Jul 2003

HD Therapy
"Equine therapy is wonderful and we have found that animals have very wonderful emotional healing abilities. We will offer equestrian programs for the beginner or the novice in a beautiful tranquil setting. For those who have interests in other activities, we will have water rafting, swimming, hiking, fishing, and many other activities for people to enjoy including arts, crafts, and literature." --Traci Lynn Rorden

Our family affected by HD.

I remember as a little girl knowing my father was different. He played ball and took time out of his life to teach the neighbor kids to play baseball and surf. Dad was a very talented artist and sportsman. Not many other dads in the neighborhood took any interest in us kids. Dad was a hero to many young boys. For a long time my friends thought he was great. Then HD crept into our lives and everyone thought he was strange. He had mood swings that became violent and he said inappropriate things to me as a girl growing up. He became obsessed with the Bible and it was hard to even talk with him. He started walking around holding his head down and never looking at anyone. I can remember school days when he would come to open house and how mean the kids were to him and to me. I never knew what was wrong with dad since he was a black market baby; so all the talk of him being crazy was the only thing I knew.

I was afraid of my father yet I would not know what to do without the man who taught me to swim with the dolphins and to play baseball, in my case poorly. Dad wanted to be the best dad ever, but the disease would not let him and took him away from us by the time I was 10 he was really in a bad way so much of the time. I would have loved to go to a camp where other children were going through the same things. It was very hard and I never fit in in school due to my father's illness. I hate to say it but even the teachers treated me different. I will never forget a teacher whom my father went to church with took it upon himself to tell me I was a sinner and I should go be forgiven in church with my father. It killed me, and I will never forget it. My mom and brother and I had long since decided dad's beliefs did not have to be ours because he was so obsessive and judgmental.

We tried to get help from the police and social services and no one would help us. Times got very bad when dad would get off the medications he was given for mental illness. He one day knocked all the windows out of our car and in the morning we just got in and sat down like nothing happened. The kids at school were of course curious as to why we had no windows. I made up a story and it was a silly one. I knew they did not believe me but I did not let it get me down. I wanted to protect what family life I had. My visits to my grandparents were my solace. When my cousins would come down to play were the only times with kids I had real conversations and real enjoyment. They seemed to love me for me and not worry about how strange dad was. We fought and played just like any other children and it was wonderful. I remember one day asking my grandfather if I could call him dad. Grandpa said he would not want to hurt my mom and dad, that I could not. I look back now and I am glad he said that since I know now dad could not help who he was.

I started wanting a horse and mom and dad hocked everything and bought corrals and two horses we rode all the time and dad seemed to do much better when he was riding. I even could see his face since he had to watch were he was going without mom to guide him. It was nice times for a while with the horses until we could no longer afford to feed them and the neighbors all bought them for their kids. I had a rough time loosing the only things that seemed to bring dad back a little. I started realizing that loosing things was not so bad I wondered how dad felt inside loosing his entire existence. It was his fate to carry this illness and I never realized how real that was until I found the biological family name that fit in dad's tree, Fate.

I started looking into dad's biological family to see what if any mental illness they had. I searched for years with no findings. I even paid an investigator to find them. Finally I ordered dad's birth certificate from Orange County California and found his biological parents listed. I searched and finally found the names and areas of the family group. I was shocked to find out that out of 8 children all but two had Huntington's disease, and even more shocked to find out that the carrier was his mother since doctors had told me it was a man's illness and women did not have to worry. We went through so much with Huntington's disease and it took so much from us all. My brother now has it and I am at risk along with my daughter.

We are putting together a Ranch Camp in Wallowa County Oregon to assist families and children who have Huntington's disease or are at risk for the illness. We will offer information and referral services to families by contacting and educating the social service programs in their respective states. They will have a chance to meet others and talk about their genetic fate, and have a great time in the wilderness of Wallowa County. This camp will offer stability, families can return as often as they like. Equine therapy is wonderful and we have found that animals have very wonderful emotional healing abilities. We will offer equestrian programs for the beginner or the novice in a beautiful tranquil setting. For those who have interests in other activities, we will have water rafting, swimming, hiking, fishing, and many other activities for people to enjoy including arts, crafts, and literature.

I would have loved to have been educated so when people teased me and told me I was going to be crazy like my dad I could have told them straight up what his problems were. I would have been able to educate others with the knowledge that these camps can give. It would have made things better in a small way and I could have felt the pride of knowing how hard dad had to be fighting just to have a little normalcy.

We are a grass roots organization working hard to fund this project. Any financial assistance, no matter how small, would be greatly appreciated. I know this will come to fruition, and I hope to see many who suffer from a genetic illness at our camps.

Thanks so much for your time and please visit our web site at http://generationsofhope.tripod.com.

Thanks, Traci L. Rorden.

Source: Traci Lynn Rorden 03 Jul 2003

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