My story starts 42 years ago, when my brother was diagnosed with DMD, I was a very young girl at the time, but he was my big brother that I loved more than life itself. So smart, so kind hearted, and so gentle a soul. My parents did everything they could to extend his life, and they were successful, he made it to 27 years old...which was unheard of at that time. The final autopsy revealed that the arteries to his heart were frayed. Those words resonate in my head for life. He was on steroids until he couldn't walk any more. BUt the words...frayed arteries again, resonate in my head.
I am a Mom now, with two sons, one is a healthy 21 year old, my 15 year old has DMD. When he was diagnosed the words that resonate in my head came back stronger...frayed arteries. Drumming in my head as they talk about prednisone..frayed arteries, steroids...not a good combination. I have refused steroid treatment, because it truly does nothing but add to the eventual decay of his most important muscle, his heart. He is a bright boy, very hopeful, very handsome, with big brown eyes that draw you in, and dimples deep as swimming pools. His intellect is questioned by none, he truly is one of the most brilliant people I know. He has a strong attention to detail, and possesses a natural mechanical ability...much like my brother. Sam is special, people who meet him for the first time learn from him. To know Sam is to know true inner strength of Herculean proportions. But this disease, it is taking its toll on him, he is atrophying faster than medicine and therapy can keep up with. He has hopes dreams and aspirations much like any 15 year old boy. He wants to get a job, get a car, and once, just once, have a girlfriend. He wants to goof off with friends, life for Sam is a waiting game...will they come up with something in time for me? Or will I die at a young age the same as my Uncle that I never got to meet. It breaks my heart every day, and I too find myself in that same waiting game.
We dont have time to wait any longer. We are tax payers that wind up having to pay for stupid things like the sex life of a tsi tsi fly, that pay taxes to have money sent to Africa to teach them how to wash their genitals, we have money for all these things but we do not have money to save the lives of our children? There have been far more advances in aids research, and far more dollars released to them, where as those of us who have loved ones with DMD have very little if any federal dollars in research. I beg of you to please expedite any medicines, and please, allow us to choose whether or not to get a medication, even if it is not FDA approved as of yet, but if it shows efficacy, please let us determine what is best for our families!
Please, i beg of you, help me save my son from the clutches of this God awful disease. There are thousands of American boys that are doing nothing more than waiting, waiting, praying, hoping. THere are ten times as many Moms, Dads, Grandmothers, Grandfathers, Aunts, Uncles, brothers, sisters, cousins...hoping...praying...waiting.