HD Lighthouse Contributing Editor's Comment: We treasure the time we spend in beautiful places be it my Grass Valley, CA or Janice's Little Switzerland, OR. --Jerry
Posted to the HDL: 30 May 2003

Generation's of Hope Ranch for families affected by Genetic Disease

by
Janice L. Baker

Granddaughter Felicia Anne Rorden, at risk

In 1971 my husband was diagnosed with schizophrenia. He was 26 years old and went through counselor after counselor, took medication for psychosis and spent his life thinking that he was mentally ill. Bob (my husband) was given to his family by another family who had adopted him, but for some reason, (which I now understand) wanted to give him up. He was angry and confused and could never understand why someone would not want his or her child.

Bob had many emotional outbursts and frightened my children and myself constantly. I loved him, but could not understand his mood swings, his paranoid delusions and felt that he could be quite dangerous, unless I managed to keep him on his medication, a responsibility I did not take lightly. When my children were older, I learned the embarrassment they went through, understood their acting out, and actually because of our fear and frustration, we became extremely close. I was always involved in social work, I think partly because of my own baggage, and my understanding of pain, fear and family dysfunction.

We moved to Oregon in l989 because Bob had been working at Camp Pendleton as a gardener and I was told by his supervisor that he was getting more belligerent and for some reason his balance was bad and they felt he should go on disability. California is a costly place to live and we all loved Oregon, so we moved. As soon as Bob got to Oregon, he started threatening my children and myself again and I decided that I had to get a divorce. He was institutionalized and the guilt was so much for all of us. We finally came to grips with his diagnosis, when one day at work I got a call that changed all of our lives. I was a juvenile director in Wallowa County Oregon, and a social worker called to tell me that dad was not schizophrenic, but he had a disease called Huntington's and that both of my children had a 50-50 chance of inheriting this illness. I was devastated and so were my children.

It has been many years now, and we have learned to deal with this traumatic disease. My son contracted HD at 26, but has done so much better than his father (who died at 52), because he knew what the disease was and because he knew what to expect. My daughter was already married when we learned of this disease and she had a daughter, who of course is also at risk. We are learning as much about the disease as possible. We also understand that families have a right to their anger, guilt, fear, disgust and anguish. Bobby Jr., my son is also my hero. He tells people of the disease, he tries to make the best of what life he has left and he is a 33-year-old optimist.

I am writing this short synopsis of our family history for a very important reason. We started going to a Center of Excellence approximately six months ago at UCSD, California, under Dr. Jody Corey Bloom and Bob Jr, was able to enter into an experimental drug project. During this time we all felt that much more could be done for families with genetic diseases. One night late, I was reading, as I often do, new information regarding HD and I learned of a camp in New Zealand for Huntington's Disease. I was enthralled and started e-mailing this camp to learn about their family research. The work that they do is tremendous for several reasons. Families can visit in a non-threatening, non-institutionalized setting and talk with others of their grief, their fears, and their frustrations. Many of the letters that I read from those "at risk" youth who attended camp were so poignant and sad. They were also the feelings that my children expressed many times and made us all cry at their pain. The camp was set up to help "at risk" learn more about the disease, to encourage them to talk of their emotions freely without feeling a sense of disrespect regarding affected members, and to take time for themselves and have fun.

I talked to UCSD about starting such a project in Wallowa County Oregon, a beautiful country setting known as the "Little Switzerland of Oregon." My daughter and I started working on this project over four months ago. We are now in the middle of obtaining our 501(c) 3 and have a written proposal with pictures of our area. We are very determined to start a ranch for those affected, "at risk", or those caregivers who may need respite with a genetic illness such as HD. The project has consumed our very existence; however, we feel it is a worthy cause and are now looking for support from agencies that deal with genetic diseases, such as yours. I know the fine work that has been done to isolate the gene, to look for a cure, to slow the progression of these diseases and to try and help families.

I also know that a project like this is very much needed in our nation, and I know that there is one in New York, held annually. We are not looking to duplicate the efforts of anyone, but we are hoping that a ranch, that can offer every outdoor recreational activity, can also help the family unit feel they have control in their lives. When I was at my worst, I learned to fear everything that I had always cherished in my youth. The stress of the disease was taking a part of me that I did not want to lose. I really realized this when a sweet dog came in my yard, and for the first time, an avid animal lover, feared its very existence. I was a talented horsewoman in my youth, and yet I could feel that fear when I went to purchase a horse with a friend. She encouraged me to try and ride again, and it was much like a miracle. I learned to deal with my fear, and I was able to take back some control in my life when I realized that I could ride and control a great steed once again. I have always believed in nature and animals, along with lots of therapy, and compassion, as help in the healing process.

I want to express, what so many feel about the idea of a ranch for families that are affected by a genetic illness. I have been keeping UCSD, Dr Jody Corey Bloom and Jody Goldstein abreast of our work, and the center has been very supportive. We decided to start our own non-profit because we want this project to be open to everyone, and we want Doctor's, Researcher's and those social workers that are in the trenches to be able to come during the camps or in the winters for in-service and sharing of information. Sometimes I think we drink, eat and breathe this project and many, including our very supportive State Representative, Greg Smith, ask why? The answer is simple. I want to leave a legacy for my children and so many other families who truly suffer with a life that most cannot begin to understand. I want this to be grass roots, and I am hoping that we can get a paid social worker who wants to study the family dynamic from every center to come and spend time learning what we all go through and use the information to better understand the fact that this is a family illness, and every family goes through their own feelings of quiet desperation.

We have found the ranch that I am working to fund, a beautiful ranch with the most tranquil view of the mountains and a horse facility that will be used by the locals at a cost when the ranch is not in use by our project. I would like to charge around $500.00 for five days, and for those that cannot afford the money, we will have scholarships. I have done fundraising and grants for several big non-profits and I know the politics and the work that this entails. The ranch is self-sustaining, except for the initial price, and I am looking into funding with many foundations and philanthropists who can help us with this project.

Now, to the point, I would like the support of your organization, any suggestions, and of course, when we are ready, referrals. I cannot explain the disease as a social worker can, I cannot talk of the complicated research that is being done to help those who suffer from a genetic illness. What I can do, is reach out to so many who want to learn more about what is happening in their families, who would like to know about the newest research and want to swim, fish, be around animals, and experience respite and fun for five days. I would like those who attend to be able to discuss with professionals, such as you, about their lives, and their fate.

I am looking for support, and I want all who are interested to think about how this can work for your centers, and how it can help the medical and research communities. I read the newsletters, the ones that explain the possible progress, and frankly, as a college educated social worker, I can still never understand the genetics or the medical lingo. I think every volunteer from genetic centers can accomplish so much by explaining in lay terms what each and every family can expect and when. I very much bow to your experience and your knowledge.

My granddaughter, would like to start a web page for those who attend camp and an e-mail program so that everyone, whether they have a computer or not, can talk to the new friends that they make. She would like to get them e-mail addresses and show them how to use library computers to keep in touch. We will also have a newsletter, and lots of poems and letters of hopes and fears, that we can share with the genetic disease community. We want to keep in contact with the youth and families that come to the camp. We will call and see how they are during the year, and let them know this is their home away from home.

Our community, Joseph, Oregon, where Chief Joseph was born and wintered, is also an art colony with a diverse and cultural population of people who would love to help with this project. We have Fish Trap here, a program for Novelists from the Pacific Northwest who would love to assist in any way they can.

Now, I am asking you for your support and your ideas. This is the one thing that I can do for my late husband, my children and for all of the families that need support. It is a project that needs the backing of each and every genetic center. Please take the time to write any of your questions down and any suggestions. Letters of support would be most welcome and help with fundraising. If you have certain forms that will help us in obtaining information such as diet, referrals or any innovative ideas, please send them to Janie_baker@hotmail.com , or Jan Baker at 65832 Dobbins Road, Joseph Oregon, 97846. If you have questions you can also contact me at (541) 426-5966. Your work will someday save so many lives, and I cannot thank you enough. I would like ours to help your research and I would like it to be a meaningful program for the families we have targeted. If you have suggestions on any program aspects, please send them immediately and thank you all for your time, training and tireless research.

Sincerely Janice A Baker
Traci L. Rorden (my daughter and tireless researcher)tracilrorden@eoni.com
Felicia Rorden (my granddaughter and dedicated worker)
Robert A. Baker (my son, my steward of HD, my hero)

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Source: Generation’s of Hope Ranch 27 May 2003

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