What I said to Congress today…

Posted by: Christine McSherry on February 07, 2014

“Good morning, ladies and gentlemen. My name is Christine McSherry and my beautiful son, Jett, has eyes that are the color of the morning sky. I remember when my son first smiled at me. I remember his first words. I remember when he first grabbed my hands in his tiny ones and squeezed them. When my beautiful son was 5, his doctor told me he had Duchenne’s Muscular Dystrophy. I didn’t know anything about this disease. I learned quickly. He, like many other boys before him, would slowly waste away, his muscles being eaten away by a genetic defect. All of these boys would die. There was no cure, and all we could do was wait. When my beautiful son was 7, he began to slow down, he could not run as quickly. He didn’t know why he was slower than his friends, and we could do nothing. When he was 8, he began to fall down. At 9, he needed a scooter to get around. As the years passed, my beautiful son fell more and more. When Jett was 14, he fell hard in the shower and he told me that he couldn’t take it anymore. He asked me why this happened to him, did he do something wrong, did we? My beautiful son lives in a wheelchair now. He can no longer feed himself. He can barely use his hands at all anymore. He asked me the other day, “mom, can you hug me, because I can’t hug you anymore.”

My beautiful son was born on October 12, 1995. He likes a girl named Courtney. He dreams of being a good father one day, because he thinks that is the very best thing a man can be. But he thinks he will die in a few years, or maybe less. He said to me the other day that he can’t believe in God, because God would not do this to him. So he no longer prays…

But I pray. I pray every night, as I lay awake and stare into the darkness. I don’t sleep anymore. I pray that I am doing everything I can to save my son’s life. I pray that I can save him. I pray he will get a medication that may save him. I pray that I will watch him grow old, get married and have children. I pray that he will see his next birthday. I pray for more moments for him, for us, for all of the boys that have this disease. Life is a series of moments, each precious, each filled with possibility.

At this moment, we stand at the edge of a precipice. In front of us lies a new medication, a medication that seems like it could be a cure for Duchenne’s. 12 lucky boys have been on this medication for over 120 weeks. There are no side effects. They are not getting worse, they are getting better. Their muscles are no longer wasting away. I know in my heart that if my son could get this medication, his disease might be stabilized. He lung muscles could stay strong, and his heart would keep beating. He might live. Why can’t he get this medication? Despite the FDASIA mandate to accelerate approval for new, breakthrough therapy that show early promise, the FDA is delaying the approval of this drug, and with it, my son’s chance for a therapy that could save his life. As the FDA sifts through paperwork, and more and more bureaucracy, our children are dying. Our children. My son. My beautiful son is dying, while people in offices across the Potomac are sifting through paperwork. By what right can these people delay my son’s access to this medication? By what right?

We named our son “Jett” because it was a strong name, and we wanted our boy to have a name that everyone would remember. Please remember him. And remember all of the boys and their parents and families that lay awake at night and wait for access to a drug that is just beyond their grasp. “

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