Banding together

Dear Oprah,Ellen,Larry,Montel, My name is Melanie Coleman and i have ALS. I am a married mother of two wonderful, bright Children who have had to live with the fact that their mom has a fatal disease. At 10 and 11 they should be carefree and happy,but are very sad that mom is wasting away right before their eyes. My first instint as a mom is to shield them, but to do that i would have to lie to them or walk away from them as to spare them the horror of what ALS has done to me. Walking away isn't an option and we follow the rule thalt shall not lie. The are thrust into the role of caretaker when here alone with me. For two months now i have heard Sam and Cathy's prayers and one thing that strikes rage in me is when i hear them both pray for Senator Coburn to lift the hold on ALS Registry Legistation in the Senate. It fills me with anguish to have them burdened with this and to hear them crying just rips my heart out. They should be carefree and doing kid things noy hovering over mom wondering if i am going back to the hospital. My wish is for Senator Coburn to lift the hold and let this continue forward for mine, my families and all of those facing Als and the generations that will have to face this horrible disease. If i were a famous person i might draw attention, but i am just a small time christian gal with a family who tries to make every day the best it can be. I was in the prime of my life when this disease hit , But it took from 1998 till March of 2007 to diagnose me. It takes every cent my husband and i make to take care of me but never have i heard my husband or my children complain. Please let us in the ALS community use your voices to get the help we need in spreading the word. It will still be to late for some of us but if it will help two, twenty or two thousand then i will have done what i set out to do. WHAT SCARES MY FAMILY AND KEEPS THEM CLOSE TO ME IS EVERY 90 MINUTES SOMEONE DIES FROM ALS AND EVERY 90 MINUTES SOMEONE IS DIAGNOSED. I beg you for all of us would you please help us? Thank you all and as always, go with God. Sincerely, Melanie Coleman