After a number of years of testing, doctor visits, and hospitalizations, our daughter Cynthia Organ was diagnosed with Prader-Willie Syndrome sometime in the 1970’s.

Cindy graduated from St. Catherine’s High School in 1975. Cindy lived at home for a number of years after she graduated, and not liking the restrictions on her while living at home, Cindy moved out.

Cindy 1She lived by herself for a number of years. At this time she weighed about 250 lbs or more and was on insulin. Cindy ended up in the hospital a number of times, due to problems caused by her weight, and finally in 1983 she moved to ODTC in Oconomowoc, Wisconsin. She was not very happy about this move, and this was not an easy adjustment for Cindy. After a number of episodes, Cindy settled down and began to work with the program.

Cindy has not been in the hospital because of complications from her weight since she moved to ODTC.

In March of 1983 when Cindy moved to ODTC she was 4 ft. 11 in. tall, was a diabetic (brought on by her extreme weight) and weighed 276 lbs.

Cindy has learned throughout the years that by moving to ODTC (now known as Prader-Willi Homes of Oconomowoc) her health has improved, she no longer takes insulin and is a healthy 120 lbs. most of the time. Her weight fluctuates a lot when she comes home for visits, but she is able to lose the weight within 3 to 5 days.

Thanks to all the wonderful help, perseverance (by Cindy and PWHO), and the dedicated people who work at PWHO, Cindy’s dad and I would definitely call Cindy’s stay at PWHO a success story.

Cindy now calls Prader-Willi Homes of Oconomowoc her home and realizes this is the best place for her.

In Cindy’s Words…

Cindy 5

I was born on July 28, 1957 5lbs, 4 oz, and 18 inches long. I was so small; I could fit into an adult size hand. I was baptized in the hospital because they did not think that I was going to survive. I was born without hip sockets, and was put in a cast and had to have a bar across me for support. As I grew up, I gained a lot of weight. In 1982, I had gastric bypass surgery because my family and I thought that it would help me lose weight, but it did not work out for me. In fact I actually died for 5 minutes during surgery. It was then that God spoke to me and said that he was not ready for me to come and that I had a purpose here on earth.

As an adolescent I was very sassy and very stubborn. I did not accept that I had Prader-Willi Syndrome. I frequently was defiant and got into trouble. Till this day, my parents said that I should not have been allowed to come to my brother’s wedding because I was sassy to my grandma. My parents said that I just wasn’t ready. After high school, I moved out and lived by myself. Being on my own and independent was very important to me. Oh yeah, did I mention that I was stubborn? Unfortunately, my weight became dangerously high and I was very unhealthy. In 1983, I moved to ODTC. (Oconomowoc Developmental Training Center) I weighed 277 lbs. At first, I was not exited to come because I wanted to be living on my own. I had even tried to run away, attempted to commit suicide, and it was agreed that it would not be best for me to go home for Easter due to my behavior.

Cindy & Tony 3

During my time at ODTC (now Prader-Willi Homes of Oconomowoc) I have had many jobs and different employment opportunities. Throughout the earlier part of me being here, I worked on campus as a teacher’s aid, a secretary, and a librarian. In 1988, I was promoted and began working in the community at Oconomowoc Manufacturing. Just last February, I was asked to work at a different community location, Duct-O-Wire.

Cindy 2Even though at first I was not exited to be here because I wanted to be on my own, I now am thankful for being here and realize that this is the best place for me. Now I consider Prader-Willi Homes of Oconomowoc my home. I have grown to be a very independent person and consider myself to be a great role model for other residents to look up to. I can even shop by myself independently. I have also done a very good job with my weight. I am now and have been for the last three years in my maintenance weight (between 115 and 125 lbs.) I am very proud of myself and the woman I have become. It was really tough, but I have grown a lot through every struggle I have been through. I know that if I would not have come to PWHO, I would not be alive today. I just recently celebrated my 50th Birthday; a day that long ago, did not seem possible. I have 74 friends here that share the same struggles as me with Prader-Willi Syndrome. I love each and every one of the staff at PWHO and consider them my family.