A note from Team Avedis

In 2009 when my son, Avedis, was diagnosed with ataxia telangiectasia we were grief stricken. After 7 long years of misdiagnosis after misdiagnosis we were just ready to give up on ever finding the cause of Avedis' symptoms. One last ditch effort to self diagnose resulted in me entering all of Avedis' unrelated symptoms into a google search and up popped a picture of a child with ataxia telangiectasia. I knew in an instant that this was it. As waves of relief washed over me, to finally have a name; they were tempered with pure and gut wrenching grief to realize that A-T would rob our beautiful boy of all that he deserved in and from life. The past (nearly) three years have been a lesson in learning to live life to the fullest and enjoying each and every day that we are given. I promise Avi that I will be his hands when he can no longer feed himself or write, his eyes when he can no longer read, his legs when he can no longer walk and his voice when he can no longer speak or advocate for himself. Although we have had to take on many of these task for him in recent months; we will never need to be his mind, his spirit or his smile-- those have all been spared and those are all his own and make up what is most beautiful about him. In July we held a successful wine tasting, in Sept. we will be hosting the second annual Ride 4 Avi and in Jan. we will be participating in the family 5K in Disney with the A-T Cure Team. I hope you will be able to support us in funding the research to find a life saving cure for Avedis and all of those affected by A-T. Together let us all learn from yesterday, live for today and hope for tommorow- in the name of a cure for A-T.

Team Members

Team Members Name Raised Kristen A. Akian $16,277.00 Ara C. Akian $1,400.00 Avedis Akian $2,030.00 Team has 3 Individuals