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Tuesday, November 26, 2013

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FacebookSF - International Rett Syndrome Foundation
Make your shopping at Amazon.com count twice. Usewww.smile.amazon.com to make your Amazon purchases and select IRSF as your charity of choice. Amazon will donate 0.5% of each purchase to IRSF.

Thursday, September 26, 2013

Timeline Photos

Timeline Photos


Her hair was up in a ponytail, her favorite dress tied with a bow. Today was Daddy's Day at school, and she couldn't wait to go. But her mommy tried to tell her, that she probably should stay home. Why the kids might not understand, if she went to school alone. But she was not afraid; she knew just what to say. What to tell her classmates of why he wasn't there today. But still her mother worried,... for her to face this day alone. And that was why once again, she tried to keep her daughter home. But the little girl went to school eager to tell them all, about a dad she never sees, a dad who never calls. There were daddies along the wall in back, for everyone to meet. Children squirming impatiently, anxious in their seats. One by one the teacher called a student from the class, to introduce their daddy, as seconds slowly passed. At last the teacher called her name, every child turned to stare, each of them was searching, a man who wasn't there. 'Where's her daddy at?' she heard a boy call out. 'She probably doesn't have one,' another student dared to shout. And from somewhere near the back, she heard a daddy say, 'Looks like another deadbeat dad, too busy to waste his day.' The words did not offend her, as she smiled up at her Mom, and looked back at her teacher, who told her to go on. And with hands behind her back, slowly she began to speak. And out from the mouth of a child, came words incredibly unique. 'My Daddy couldn't be here, because he lives so far away. But I know he wishes he could be, since this is such a special day. And though you cannot meet him, I wanted you to know, all about my daddy, and how much he loves me so. He loved to tell me stories, he taught me to ride my bike, and he surprised me with pink roses, and taught me to fly a kite. We used to share fudge sundaes, and ice cream in a cone, and though you cannot see him, I'm not standing here alone. 'Cause my daddy's always with me, even though we are apart, I know because he told me, he'll forever be in my heart. ‘With that, her little hand reached up, and lay across her chest, feeling her own heartbeat, beneath her favorite dress. And from somewhere here in the crowd of dads, her mother stood in tears, proudly watching her daughter, who was wise beyond her years. She stood up for the love of a man not in her life, doing what was best for her, doing what was right. And when she dropped her hand back down, staring straight into the crowd, she finished with a voice so soft, but its message clear and loud. 'I love my daddy very much, he's my shining star, and if he could, he'd be here, but heaven's just too far. You see he is a soldier and died just this past year, when a roadside bomb hit his convoy and taught the world to fear. But sometimes when I close my eyes, it's like he never went away.' And then she closed her eyes, and saw him there that day. And to her mother’s amazement, she witnessed with surprise. A room full of daddies and children, all starting to close their eyes. Who knows what they saw before them, who knows what they felt inside. Perhaps for merely a second, they saw him at her side. 'I know you're with me Daddy,' to the silence she called out. And what happened next made believers, of those once filled with doubt. Not one in that room could explain it, for each of their eyes had been closed. But there on the desk beside her, was a fragrant long-stemmed rose. And a child was blessed, if only for a moment, by the love of her shining star. And given the gift of believing, that heaven is never too far

Saturday, July 13, 2013

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BioscienceTechnology.com features MECP2 research from the Bird and Greenberg lab. Worth a read.....

"Rett syndrome is all about loss. Like autism, this disorder of neurological development steals abilities from children. It strikes around their first birthdays, just as they are learning to walk and talk.

Unlike autism, whose cause remains a mystery, Rett syndrome has been definitively traced to mutations in a single gene. An X chromosome-linked disorder, it affects girls almost exclusively, causing regression in language acquisition and motor control as well as seizures and respiratory problems." Click below to read more.

Videos click You Tube Video to watch - Graziellacohn

Videos click You Tube Video to watch - Graziellacohn