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Sunday, June 13, 2010

Day 55: Our Sons - Curing Duchenne's Disease

Brian and I attended a charity fundraiser last night for Cure Duchenne. This is the second year we have attended. We are invited by our community friends Chris & Amy Martin. The Martin's have three beautiful children. Derek, their oldest son, Natalie, their middle child, and Will who is 8 years old. A few years ago Will was diagnosed with a very rare disease: Duchenne Muscular Dystrophy. The disease ONLY affects boys. The boy's bodies break down by the time these children hit their teens and many pass away before the age of 20. There is no cure for this horrible and mind boggling disease. How could you expect parents to raise their babies into toddlers and into adolescents all along knowing that they are going to die before they hit adult age? How cruel can the world be?

The Martin's are beautiful people who with enormous generosity and hopes of finding a cure for their son have launched Dealing for Duchenne as a yearly fundraiser. The goal is that well needed resources raised at this benefit will fund new research to find a cure for this very rare disease. Up until recently there has been NO treatment available for boys in the Southern California area who battle this ugly disease; forcing families to travel across the country to the few institutions conducting studies to fight Duchenne. Of course this is prohibitable for most. So the Martin's have provided hope to many families in our area because now there is a treatment center at UCLA to work with these boys to find a cure.

Pictured here is Will (left) sitting on his Mom's lap, Amy Martin, Ann Heche and her husband & Son, and Chris Martin (far right), Will's dad.

While the evening is festive with a silent auction, great entertainers, and a lively live auction, the undercurrent tale is that these parents are fighting to keep their children alive. It's unimaginable to me that they look into their son's eyes all along knowing that they won't see adulthood. Thank goodness for parents like the Martin's and all the others who are working diligently to find a cure to save their children and countless other young boys. This was an evening that Brian and I were so proud to support. Maybe next year you too will join us and help keep Will and others alive?

To learn more about this disease, visit


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Thank you so much for your interest in my 49th year! I appreciate your support! -Robyn