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Donations to help with Riley's medical expenses and help find a cure for Canavan can be sent to:

% Hope For Riley
Maple City Savings and Loan
145 Main Street
Hornell, NY 14843

 

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All funds go to help with Riley's medical expenses and Canavan's Research

My Story

My Name is Riley Monroe Bentley, I was born July 24th, 2010 in Hornell NY at 1:47 am to Nathan and Cassie Bentley.  My Grandparents are Monroe and Debbie (Becher) Rosemier of  Hornell and David and Jennifer ( Virkus) Bentley of Wellsville NY. 

When I was roughly two weeks old I was told I had colic and  it lasted for a few months. In November of 2010 my family members noticed that I was delayed by not being able to hold my head up, or roll/reach for my toys. My mommy and daddy  took me to Strong hospital in Rochester NY to see a neurologist. My neurologist Dr. Stone ran some test such as MRI, blood test and a urine catch. In May 2011 I was diagnosed with Canavan's disease,a type of leukodystrophy . When my mommy and daddy were told that there is no cure and what the prognosis is for this terrible disease they, like many other parents of children with Canavan's did not give up and said they will do everything they can, and they are along with my family. I recently just celebrated my first birthday. As of right now I have gained some head control, I can hold my head up for almost a minute. I can roll from my back to my sides, and I can reach for my toys laying on my back. I love to laugh and smile and my family loves to hear it. I am currently undergoing more testsad because in October I will be getting a GTube, a type feeding tube that will help me. I am currently on a "cocktail" of medications. It is not a cure, but experimental and in some treated children have slowed down the progression rate . We hope that in the next few years that the stem cell trials will be funded and all my little friends and I can have it done. 

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Help Riley

Hope for Riley bracelets are here!

Help Riley with medical treatments and support Canavan research by purchasing a Hope for Riley bracelet.  Watch for upcoming events where we will be selling these.