BENEFITING: RUSSIA COMMUNITY FIRE CO
Our son's name is Ilya, Ilyusha, as we call him lovingly in Russian. He is seven. He was born an absolutely perfect healthy boy, full of joy and energy. He grew and developed fine, went to the kindergarten and pre-school as the other kids, everything was just normal. Nobody could have suspected that one day it all would change. We first noticed some alarming signs when he stopped running and jumping as he used to, then it became difficult for him to climb the stairs. We went to the doctors and the most horrifying days in any parent's life had begun. The preliminary diagnosis based on the symptoms was: Duchenne Progressive Muscular Dystrophy. Duchenne is a devastating genetic muscle disease in children, especially boys. Historically, most boys with DPMD do not survive beyond twenty, and those that do will be wheelchair bound by age 12 and experience social isolation. The simplest of tasks become difficult, and in the later stages, as the illness creeps upward, heart and breathing muscles begin to fail. Breathing becomes difficult and then, impossible. They die. The most difficult was to confirm the correct diagnosis. Nobody in our family had it. We could not believe that our boy had the genetic disease. It was not easy to confirm the diagnosis in Russia as the required genetic tests were not available there. We went from hospital to hospital, from doctor to doctor, all the way to Moscow and did not stop there. It took us almost two years. Finally, we were able to do the tests at the US hospital in Utah that confirmed the worst: Ilyusha had Duchenne. In Russia we were told right away that there was no cure. We can only observe, give our son supporting hormonal drug that destroys other organs and, mostly the heart, and wait for the natural course of the disease to unfold. In a meantime our son was getting worse. It was harder and harder for him to walk, get up, climb the stairs:We just could not let it be that way. We could not watch him suffer and ask for how long we would have him. We started to look for other options overseas. We found Cincinnati Children's Medical Center that accepted Ilyusha. We were able to make the trip to the USA because our family, friends and many other kind people helped us. On our very first visit to the Cincinnati Children's we were shocked by the doctor's kindness, professionalism and attitude. They have told us that we must fight, that life did not stop, that research was going on to find the cure, to slow the progression, to transform the disease from lethal into chronic. We were offered a different therapy course, supporting measures, were given hope and we saw the improvement! Our hope is that current treatment plan offered by the Children's will help to slow down the progression of the disease, and that in a meantime the genetic cure will be developed and our son can be saved. The stage II and III trials of new promising drugs are going on right now. Ilya loves it here in Cincinnati. He has started the first grade, is learning English and making friends at school. He is a very bright, a very happy, and a very curious boy. We want him to have a happy childhood, we want him to enjoy his life, we want him to live.