My son Benedict was diagnosed in 2003 at 4 1/2 years old while I was 5 months pregnant with my daughter. It was the most devastating news any parent could ever receive. It was our worst nightmare to learn my son had a progressive and terminal illness with no treatments or cure available. It has been devastating to our entire family, especially my son. Our family has never been the same since.
My son lost his ability to walk at age 10. His heart function started declining at age 12 and declined quickly. He had severe cardiomyopathy when he had his much needed spinal fusion at the age of 12 1/2.
My son is now 15 years old and has been in the beginning stages of heart failure. Words can not express the pain we feel watching our beautiful boy go through this nightmare and the fear of losing him. It has been hard on all of us and has completely changed our lives and turned them upside down. My son can barely move at all and has severe contractures that cause him pain. Seeing the pain on my sons face and the tears in his eyes when he can no longer do something he used to be able to do breaks our hearts.
For the first time since my son has been diagnosed there is hope of a drug that can help our children. Please do not take this away from our children because time is not on our side. This is the last chance for many of our children. Children are dying young every day from this monster of a disease. Please do not let anymore children die unnecessarily.