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    How You Can Help

    Sherry's Story (2008)

    My name is Sherry Osinga, I'm on the Board if Directors.  I'm a 52 year old woman who was born w/ RRP, diagnosed first @ 6 months of age, and having my first surgery @ that time. As the disease progressed, and the growth became overwhelming, my parents went through the same night vigils, sitting up to watch me and make sure I was breathing. My parents and ENT surgeon opted for a tracheotomy. I had that @ 6 years of age, and kept it until I was 16. The trach allowed me to run and play w/ my friends. I played sports, softball, relay races, volleyball and gymnastics. I ran some track, but didn't really care for that. The only thing I couldn't do was swim.
     
    So when the Trach was removed @ the age of 16, I learned to swim. Needless to say, I am a poor swimmer. But I turned out to be a good water skier. And from that I learned to snow ski. I really believe all the physical activity I engaged in had a lot to do w/ my attitude about life.
     
    I also was the oldest of 4 children. My mother worked, and I was responsible for taking and picking up my siblings from school, and caring for them and having supper on the table when our parents got home from work. So I had alot of responsibilities.
     
    As far as my voice went, I stood in front of class and gave my book reports and various presentations. The kids knew they had to listen, and the teacher enforced that. I did this w/ a tracheostomy, holding my finger over the hole. I didn't spend alot of time thinking about what the other kids thougth about me, I was only interested in concentrating on the work and getting the information right. So my focus was on learning, and imparting that learned info. It seems that when you have something learned and researched to say, people really do listen, no matter what you sound like. That's not to say there aren't limitations,There are. When I was in school @ Vanderbilt, my instructors talked me into presenting to my class from a podium w/ a microphone. That did not work, and so I was presented w/ a real limitation. There were others, but I never assume anything to be a limitation until I have proven it to be so. Alot of perceived limitations simply are not so....and as a rule my employers think I can do whatever I want to. Only once have I felt discriminated against, and it was clearly the other person's problem.  
     
    Now I am an RN, have been for 31 years. I'm careful about what I present to the Dr's.... and it's less about my voice and more about being organized in my thinking. So I don't engage them to complete my thought process. I try to present them w/ a complete thought and all the information. I talk and joke as much as the next person during casual times. I never feel as if I'm having a problem being taken seriously.
     
    And as always, when I am focusing my energy toward the care and support of others, and looking outward, it gives me a feeling of accomplishment and power. It's the cure for my depression and self pity.
     
    The RRP ISA is a great source of community and literature to further you quest in your fight against this terrible disease. It's a wonderful resource and I hope it helps you as much as it has helped me. Every year it becomes more effective and user friendly..... and is about the only place you can share so completely about RRP.
     
    Welcome to the site!  I hope you have some wonderful discussions, find support, learn new treatments, and help out a few people!