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Ryan's Story 

Alexander Lietzow

May 1, 1999, to February 11, 2002



An absolute incredible gift from heaven is what he was. He filled our hearts and taught us how to love completely and unconditionally. Although he was on this earth for such a short time, he taught everyone around him more about love, bravery, patience and trucks than anyone ever has.


Ryan was diagnosed with LCH at just 11 months old, a week before his first birthday. He was stage 4 at diagnosis, with over 50 tumors on organs, bone, soft tissue and skin. His disease covered almost all his bones.  He had one large tumor that covered his heart, lungs and breathing tubes.  The tumor was as large as his tiny little chest.  At diagnosis, the doctors told me that he probably wouldn’t live through the night. Ryan fought through 62 rounds of chemotherapy over the next 2 years, before he lost his battle with Langerhans cell Histiocytosis.  



Ryan loved his life. His smile would light up any room and his belly laugh never reflected his illness or what he went through. Ryan loved trucks; he could tell us the difference between a grader, a scraper, a bulldozer and a front-end loader and would correct you in a second if you were incorrect. He loved going for rides in "Pops" boat and pretending to drive. He always said that he wanted to be a firefighter when he grew up and he loved to go visit our local fire station. Ryan also took whatever was happening to him in stride. Even when his disease was in a worsening state, and we would have to stay in the hospital for chemotherapy.  Ryan was always happy. He would ride his IV poles down the halls singing, "If you're happy and you know it, clap your hands." That's what gave me confidence that we were going to beat this awful disease. . Ryan also gave us tremendous hope. In his last week with us, nobody even knew there was anything wrong. He looked perfectly normal running around the house. 


Ryan was the absolute love of our lives, and he always will be. He is missed more and more every single day. I have no idea how we have somehow lived 24 years without him. How I wish I could see his smile and hear him laugh once more. My heart breaks every day we are not together. Living without him for the rest of our lives still seems unimaginable. | guess all I can say is that our lives are forever changed because of him.  My life has changed so much since losing Ryan. The one thing that will never change, however, is that I will miss him always until we are together again.  I would like to thank the Histiocytosis Association for all of the help and support. I would like to thank the doctors and nurses at Children’s Hospital Los Angeles, for everything you did for my little warrior. 


If you'd like to make a donation to this event in honor of Ryan, please click on the donate button below.  Thank you.