I was diagnosed with Prader-Willi Syndrome (PWS) at the age of 25. After the diagnosis, it was a very difficult time in my life and I knew that I had to adjust to some changes in my life. Consequently, it was a hard thing to accept — that I had PWS. As a result, I felt like a failure even though I had accomplished so much. My accomplishments were graduating from high school without any tutoring; receiving my driver’s license; attending college for 2 years, going to MATS – Medical Aide Training school and receiving a Certified Nursing Assistant certificate.
Although in some areas I was very well adjusted I knew I was reaching a dangerous point with my weight. I couldn’t breathe, stairs were difficult, and my activity level was down. I felt I could control my desire to want more food, but I found it and the weight was increasing at an alarming rate.
There was finally a point which I began to accept that I had PWS, and felt that it was time to move away from my parents and start a life of my own. I contacted an agency in Illinois and had several case managers; until I had a case manager that understood the Syndrome and realized what I wanted to do with my life. After doing some research, he told me about ODTC (Oconomowoc Developmental Training Center) which was located in Oconomowoc, Wisconsin and that the agency had a PWS group home. After contacting the important people and filling out an application, my parents and I went to check things out and had a tour of the group home. As a result, my parents and I were very impressed with things and enjoyed meeting nice people.
After a short period of time, ODTC called and told us that there was an opening and that I was accepted into the program. My mom told me that they were so impressed with me by the way I handled things in an independent way. We told ODTC that we would fill the opening because we decided that this was the best place for me and that I would be happy living with people like myself.
On July 28, 1988, I was admitted into ODTC and was placed into a home called Gate House, which was a PWS group home located in Oconomowoc. When I came to Gate House, I weighed 297 3/4 pounds. As a result of the house program, hard work and nutritional support, I began losing weight drastically and lost over 100 pounds in less than 1 year. Consequently, I worked in a sheltered workshop for about a couple of months and because I was so independent, I moved from the workshop setting to a job inside of Oconomowoc Manufacturing Company (OMC). At the manufacturing company job, I inspected ball bearing parts for any significant defects. For instance, I looked for cracked caps, missing balls and any other defects that I found while I was inspecting the parts. At work, I also inspected the ball bearing parts after the tight parts were spun out. I also did any other jobs that my supervisor wanted me to accomplish. I continue to work at OMC and I enjoy it very much. I make good money and know how to budget, and enjoy knowing that I can buy myself the things that I want and need. At times, it can get very hard and tedious, depending on the job that I am assigned to do on that day, but I enjoy knowing that I make a difference.
During the years of being at ODTC now called Prader-Willi Homes of Oconomowoc (PWHO), I have accomplished a number of things and have dealt with life in a positive, independent way. After my successes and accomplishments, I was transferred into Anthony House — a more independent group home with seven other residents with PWS. After about six years, the girls were excited to find out that we were getting a new home called Andrew Home. All of the girls at Andrew Home are like a family and get along with each other. At times, we have our disagreements, but that’s normal for families. I have made a lot of friends at Andrew Home and the other PW group homes. (Currently, Prader-Willi Homes of Oconomowoc operates 7 PW-specific group homes). At Andrew Home, the girls are involved in a lot of activities such as Special Olympics, and do a number of different activities in the community.
Today I weigh 158 pounds. Through my accomplishments in the ODTC now PWHO program, I can get around a lot easier, and my health is so much better I have acquired a good opinion of myself and I enjoy life to the best of my abilities. I am very thankful for family and the people that I came in contact with who helped me through the many obstacles that I had to face and master in my lifetime. If it was not for the help that I received and my hard work throughout the years, I believe I would not be alive and healthy today.
I write this story in loving memory of my parents who are no longer here with me, but will always be close to my heart. The most important thing is they know they can continue to be proud of me, and know that I am in a safe loving place.