I was born with a rare form of Congenital Muscular Dystrophy. Muscular Dystrophy (MD) is a disease of the muscles. It causes defects in muscle proteins, and the death of muscle cells and tissues. MD leaves many, like myself, very weak and requiring the use of wheelchairs and other ambulatory aids. Now, at the age of 18, I am an adult trying to be a part of the working field. The reality is that I, along with many other adults living with Muscular Dystrophy, are physically unable to find jobs because they require some sort of physical labor.
The Muscular Dystrophy Association (MDA) is an organization founded in 1950, which combats muscular dystrophy and diseases of the nervous system and muscular system by funding research, providing medical and community services, and educating Health Care professionals and the general public. MDA also provides children with MD the opportunity to go to a summer camp so they can get out of their usual element and be around other individuals who are like them and understand them. Summer camp has probably been one of the most memorable experiences of my life. I attended these summer camps from age 6 to age 17, and because of it, I have made many life-long friendships.
There is one thing that I feel MDA does not offer, however. I think it would be great if MDA could provide jobs to those with MD, also known as “Jerry's Kids.” We want to live. We want to get into the world and use our intellect and our mental and creative abilities. We want to be apart of the working community. We want a reason for living. I strongly believe there should be positions for someone to answer personal questions about surgeries, school life, relationship issues, and things that only someone who has experienced it themselves can answer. I know that personally, I would have benefited immensely if this were offered to me as a child and young adult.
Other jobs could be coordinators for Summer Camps. Being that we’ve already attended, we could help a lot with the growth of Summer Camp and make sure that it is an amazing experience for all that attend. We could be on committees, or help plan functions and fundraisers. I feel as a human being, we are just as qualified as anyone for this type of employment. It’s just so hard for companies to see that potential in us. I feel it would be wonderful if MDA could help us with that. Or have a program to help us find jobs with other companies.
Sign this petition if you feel the way I feel. Thank you so much for your time.