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Our son Daniel
Submitted by Andy Clark on 18/Aug/2008
71.34.83.225
Message:
Our son Daniel Clark-Rizzio died on August 4th of FHC at the age of 25. Like many of the people on the website, he fought an amazing battle since he was diagnosed just before his 19th birthday. When he died, he was surrounded by his family and he stayed long enough to allow his dozens and dozens of friends to say goodbye. Each one made a point of telling us that Daniel was his or her best friend. We wondered how anyone could have so many best friends. In his too brief life, Daniel accomplished more than many of us do in a lifetime. He married the woman he loved and adored and whom he called his inspiration. He found fulfilling work. He traveled to Europe and Peru. He went to school in southern California and discovered he was a Northwesterner in his heart. Most of all he cultivated a wide and diverse network of friends who are so special and will preserve his memory forever.
Daniel was diagnosed with FHC right after graduating high school. He underwent an 18 hour resection, but unfortunately, the cancer had metastasized. During the last six years he has used Oxaliplatin, Xeloda, Nexavar, an experimental trial at UC Irvine, and a fairly successful therasphere procedure in Detroit. His varices were banded and at the end amino acids were used to bring him out of his encephalopathy.
Despite these treatments, he managed to live a full and genuine life. His greatest legacy was the enormous community of friends he cultivated and treasured. On Friday, over 300 of those friends and family celebrated his life. His wife - yes he even managed to find true love - asked that all donations be made to deLiver a Cure because Daniel and she often visited the site to read the forums and chat boards. I am attaching his obituary that includes the suggestions that donations be made to the organization.
We learned many things from Daniel, but two of the most important, were first, that you have to advocate for yourself in the medical system. We learned not to be afraid to ask questions, to consult with as many doctors as possible, and to search the internet for new technologies. Second, don’t let FHC define a life.
Thanks to all of you. Daniel came to this site to get information and to hear from others in his situation. We appreciate all your efforts to fight this dread disease.
http://obits.oregonlive.com/Oregon/DeathNotices.asp?Page=LifeStory&PersonID=115271639
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