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Showing posts from March, 2011

What's So Funny 'Bout Peace, Love and Understanding?

As I walk through 
 This wicked world 
 Searchin' for light in the darkness of insanity. I ask myself
 Is all hope lost? 
 Is there only pain and hatred, and misery? And each time I feel like this inside
 There's one thing I wanna know What's so funny 'bout peace, love and understanding? What's so funny 'bout peace, love and understanding? I believe in the power of the written word.  At best words can increase understanding, offer enlightenment, and in some cases even bring healing.  An increased understanding of Pompe Disease was my hope when Dr. Lisa Sanders first contacted us.  I did not expect to also experience peace in my heart and love from strangers, but as usual Pompe always throws us a twist.  A few months ago, Donna received a call from Dr. Rand at CHOP asking if we would be willing to share Maddie's story.  She explained that there was this interesting writer for the New York Times who pens a column about medical mysteries and is also the t

Act Naturally

Image
They're gonna put me in the movies
 They're gonna make a big star out of me And all I gotta do is act naturally 



 I'm going to warn you right at the start that this post is not about Pompe. It's also not about neuromuscular disease, the folks at Genzyme, CHOP, or the MDA. It's the story of a proud dad and sometimes Grinch who's heart grew five times in one day watching Maddie Jane and her acting debut in Bye Bye Birdie. Each year our middle school puts on a musical.  A few months ago Maddie decided she wanted to try out and hopefully get a role.  After several viewings of the movie, studying lines, and practicing songs, she was ready for her big chance. That morning she walked into school a bit nervous hoping that she would do the right thing and hopefully see her name on the call back list a few days later.   Try-outs went well and a few days later she jumped into the car with a big smile on her face.  "I