Maddie's Mission

You can read it in the Sunday papers, read it in the Sunday papers Just a short update this time around.   As mentioned in my last post, Whats So Funny 'Bout Peace Love and Understanding? , Dr. Lisa Sanders of the New York Times has written an article about Maddie's diagnosis. The article was released in today's New York Times Magazine.  Please check out the link here, New York Times Magazine .  Better yet,   go pick up a fresh copy, a large coffee, and enjoy the read! All for two and two for all! Matt Credit to: Joe Jackson, " Sunday Papers "

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...

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...

Get your motor running'
 Head out on the highway
 Looking' for adventure
 And whatever comes our way
 Yeah! darling', gonna make it happen
 Take the world in a love embrace
 Fire all of your guns at once
 And explode into space Born to be wild
 Born to be wild When it comes to being cool, I used to think I fell somewhere between Richie Cunningham and Ralph Malph.  Sure, Richie was not the coolest guy on the TV show  Happy Days  because of his all American, Howdy Doody face and need to always be nice, but I had to be honest with myself.  I recognized long ago that I would never be Fonzie cool, but at least I knew I would never be mistaken for Potsie.  That was until I stood in front of a group of men and women motorcycle riders at Smaltz's Harley Davidson.  Over the past 23 years the MDA has teamed up with Harley Davidson to raise millions of dollars through the Ride for Life campaign.  The campaign starts at the local dealerships by bui...

I love the colorful clothes she wears 
 And the way the sunlight plays upon her hair 
 I hear the sound of a gentle word 
 On the wind that lifts her perfume through the air 

 I'm pickin' up good vibrations 
 She's giving me excitations 
 I'm pickin' up good vibrations 
 She's giving me excitations Good, good, good, good vibrations   She's giving me excitations Good, good, good, good vibrations   She's giving me excitations 

 I began to notice it the night before as Maddie and her friend sat at the kitchen island with Donna making signs.  They filled board after board with sayings like "Go Team Crowley", "Make A Muscle, Make A Heart", and "Pompe Power".  It continued the next morning as soon as Emma and Carter's friends began walking through the door.  The mood was clearly upbeat, in fact, a bit festive.  Within minutes the house was filled, filled with the excitement that frequently comes along with voices of youn...

Love, Love, Love. Love, Love, Love.
 Love, Love, Love.

 There's nothing you can do that can't be done.
 Nothing you can sing that can't be sung.
 Nothing you can say but you can learn how to play the game.
 It's easy.

 Nothing you can make that can't be made.
 No one you can save that can't be saved.
 Nothing you can do but you can learn how to be you in time.
 It's easy.

 All you need is love.
 All you need is love.
 All you need is love, love.
 Love is all you need. In 1975 Valentines Day was simple for this six-year-old boy.  My job was straightforward.  With a little construction paper, a little glue, a few crayons, and a little love, the perfect Valentines card was created.  Like most boys my age, passing that Valentine to the girl at the next desk just didn't seem right.  First of all, girls were still alien creatures at that time and secondly, it had to be saved for that special someone.  That special someone who had waited all day for...

Caroline laughs and it’s raining all day She loves to be one of the girls She lives in the place In the side of our lives
 Where nothing is ever put straight She turns herself round And she smiles and she says “This is it. That's the end of the joke” And loses herself in her dreaming and sleep
 And her lovers walk through in their coats

 Pretty in pink
 Isn't she? 
 Pretty in pink
 Isn't she? 

 A funny thing happens after you graduate from high school and get busy building your career, signing up for mortgages, and starting families.  Somehow the words your parents said, "I just don't understand kids today" come out of your mouth. Somehow your favorite radio station is no longer the one playing the top 40, but one that plays a mix of the 60s, 70s, and 80s.  Somehow the movies and songs you loved as a teenager find their way into your kids lives as "retro".  And, then suddenly, out of nowhere, your baby turns 16. Last weekend, we celebrated Emm...