Family Fighting Insatiable Hunger Disease Called Prader-Willi Syndrome Gains Strength From Bracelets for Hope

August 1, 2012

The 7000 Bracelets for Hope  program has touched so many lives and Evan and his family are no exception. Evan is a wonderful 5 year old little boy who has Prader Willi Syndrome, but his diagnosis doesn’t define him.  When he was born, doctors painted a bleak picture of his future as one with a hunger that would never cease, cognitive and physical delays.

While it has not been an easy road, Evan’s family has grown in ways they never anticipated.  Beating all the odds, Evan has grown into a loving child who finds wonder in the simplest of things. He gives his every effort even when he has nothing left to give.

His strength gives me strength to never give up hope that one day there will be a cure for this syndrome.  – Lisa Matesevac, GA

Evan has surpassed his parents expectations. Through hard work and numerous therapies, Evan has accomplished so much. This year he will be entering regular education kindergarten and testing for his Tiny Tiger Black Belt in Taekwondo, something they never thought possible.   Evan’s parents are in awe of his determination, as they remember all the tears that were shed when we were told he would be severely developmentally delayed.

Yet, a cure for the insatiable hunger that always pervades the thoughts and actions of an individual with PWS eludes us. I wear this beautiful bracelet with pride for my child and his accomplishments and for HOPE that one day there WILL BE A CURE!

Thank you for your generosity and the inspiration the Global Genes Project provides to all of us living with a rare disease. And most importantly, thank you to the kind person whose artistic mind made me the most stunning bracelet that I will cherish always as I am reminded of my Little Love, Evan!   – Lisa Matesevac

For more information about other organizations that Evan and his family receive support, visit:  Prader Willi Syndrome Association (USA)  and the  Foundation for Prader Willi Research (FPWR).

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