As I have said before, everything happens for a reason. This was something that happened that has changed my life significantly. My brother was in a business class that was only for Jrs. (which was him) and Srs. By being in the class you were joined in a club called DECA, which meant Distributive Education Clubs of America. Every year the class would participate in a fundraiser for the Muscular Dystrophy Association (MDA) called Shamrocks against Dystrophy. A Shamrock is a big green clover made of thick paper that is purchased for a dollar and you may advertise or honor someone on it. It is put on display so that people can see them. It is held during St. Patrick's day. It is a fundraiser that is held all over the the US (I believe). It generates a lot of money.
I am thinking sometime in January the employees at the local MDA office came to the class to motivate them in doing the fundraiser, talk about the services they provide, and to encourage the students of the other volunteer opportunities they have to help. Besides talking to the class they also showed a video of the summer camp program they have every year for anyone with the 40 different forms MD. As the students were watching the video my bro saw someone in the video with similar actions to mine. After they were done seeing the video they asked if anyone had questions. My brother was not one to speak up about my disability, but having seen the person with similar actions made him curious. He raised his hand and said "My sister has Friedrich's Ataxia." One of the gentlemen who worked at the MDA office (David D, many hugs to you!) said, "She is one of Jerry's kids!" He then gave my brother a business card and told him to have my mother called them because Friedrich's Ataxia is one of the forms of Muscular Dystrophy.
When my brother came home he fished the card from his wallet, and gave it to my mom saying, "You are one of Jerry's kids!" I was like, "I am who?" He proceeded to tell me and my mom that FA is a form of MD, and about the Labor Day telethon that raises money for MDA. That people with forms of MD are referred to as being one of Jerry's kids, because Jerry Lewis is the founder of MDA. I was thinking, aww man that is the show that interrupts my soap operas on Labor Day! I got over that quickly, and cannot wait to watch it every year. I get so overwhelmed with emotion hearing big hearted people that do not even know folks with MD give. My hat's off to Jerry Lewis too he is one big hearted individual, and I am proud to call myself one of Jerry's kid's (even still as a 32 year old woman)! We often wondered why my neurologist never said anything to me about this. I guess he knew he would have lost business, so he never said anything. I refused to go see the money hungry jerk after MDA was reveled to me and my family. To think he robbed my parents and I of 4 years of medical and financial help through numerous neurological Clinic visits (which is free), purchasing of Medical Durable Equipment (which is free, or pays a high % of) . Not to mention my happiness and attitude of being apart of the MDA family (which is free), and not feeling alone by being able to go to summer camp (which is free), or having the hope of a cure someday (I do not have to pay for research).
It makes me angry, but then again my thought is that everything happens for a reason. My life changed so much on that day. I have my brother to thank so much for opening his mouth. I never thought I would say that, LOL! As you will see in posts to come how influential MDA is to me. For more info on MDA go to www.mda.org.
Thanks for taking the time to read, MISS S