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Introduction
This is my story- a story of a loving mother and her 14 year old son who gave love and hope to all who knew him-even as he battled aplastic anemia dyskeratosis congenita, a serious, rare blood condition.
Omid mean "hope" and my son, Omid embodied hope, that was his mission. He truly cared for others while living a life of hope. Until his last breath, he fought his sickness with courage and optimism while encouraging and being kind to all around him. He finished his life with a final breath of love.
Maybe this book will be a door to the world. I want to share our experiences with others who have this illness. I want to make a difference in their lives and in the lives of their loved ones. Throughout his life, Omid loved people and always wanted to help them. By sharing this story, I want to honor my son, and complete his mission of hope and love.
Throughout these pages, I will reveal the knowledge we gained and the situations we encountered. I will portray the outstanding doctors and people who supported us. And, I will provide reference material to help readers further understand and cope with this condition.
I hope that this book will inspire medical researchers to help eliminate this rare illness. When Omid was first diagnosed with aplastic anemia dyskeratosis congenita, he was only nine years old. We didn't know anything about this illness.
At the time, the doctors had no experience with this condition. When asked if they had any background to treat my son, they responded, "No-all patients die with a serious infection."
As his mother, their hopeless answer was devastating. Yet, until the last minute of his life, I always had faith Omid would survive. We were never disillusioned, never without hope. My family and I did everything to fight this. I was always thankful to have Omid in my life, and I cherished him all of the time we shared together.
Our story begins with our family's miraculous escape from the Middle East-how my three children and I fled a terrifying life in Iran, and after brief stays in istanbul and Vienna, resettled in America. It continues with Omid's noble life struggle with, aplastic anemia.
It is my wish that these pages will support others struggling with aplastic anemia, and help achieve a cure for this condition. May these words honor my son, and inspire all of us to embrace his mission, as epitomized by his name-to live a life filled with love, strength and most of all, hope.
| "...Again, I thank G-d for feeling I deserved to have a son like Omid-an angel with such a pure soul. I'm proud and grateful to have had a son like him. He touched everyone around him-even for the short time he lived-and made them holy. I want to stress that I am not angry, upset or bitter. This is not a sad story. It's a story about someone who taught people how to love and live-someone who lived life on a loftier level. Our Creator determines when we complete our mission-when it's our time to leave this world. It's not for us to judge this. I love G-d the way I love my son-even more. Like his name, Omid lived a life of hope. He battled his illness with strength and optimism, while infusing others with love and hope. It is my wish that his mission be completed, and effective treatments and a cure for aplastic anemia dyskeratosis congenita be found. May this book(and Omid's medical records that I will make available) be a catalyst for these discoveries, and may we all, like my son, live a life filled with love, kindness, strength and most of all-hope." |
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