STEPAN KLEMENCHUK (1YO, UKRAINE) SPINAL MUSCULAR ATROPHY TYPE I
ABOUT STEPAN KLEMENCHUK
What should be the day of the most sweet and positive boy – our Stepan? In his beautiful and smart eyes the whole world seems to be not a fun place to be – his world consists of the white and cold walls, the noise of machines, everything is gray and dull. But it could change, Stepan might come back home... From the very beginning of his life the hospital became Stepan’s second home... that was the cruel life trick for our little son, to have his first breath under threat, the artificial lung ventilation (AVL) escorted him from the first day. In one moment it seemed that after three months in ICU life began to improve. Unfortunately, our happiness was replaced with our son’s extreme weakness, dyspnea and again at ICU with AVL, and this time we’ve received our son’s diagnosis of SMA Type I (Spinal Muscular Atrophy) and the ground slipped out from our feet ... My husband and I were full of regrets, what should we do? Whom to ask for help? Our little Stepan cannot breathe on his own... he already was breathing through tracheostomy connected to an AVL... very scary to see my son like this, it hurts from deep down inside, I pray to have an AVL to bring our son home with us, to raise him in love and proper care by loving parents, there are so many words we didn’t have a chance to tell him, so much love we didn’t have a chance to show because we can’t stay with him at ICU.