Maddie's Mission

When the night has come And the land is dark And the moon is the only light we’ll see No, I won’t be afraid Oh, I won’t be afraid Just as long as you stand, stand by me I haven’t written too much about our son Carter.   Maybe it’s because he has enough to manage as the big brother and maybe it’s because I wanted to keep him away from the attention.  But, after his eighth grade  chorus class sang Stand By Me , a post stuck in my head.  Whatever the reason, today is his day and it is well deserved. Carter has the good fortune and the misfortune of being the only boy stuck between two sisters.  The good fortune part the deal is threefold.  First, he doesn’t have to compete with his brothers for the biggest eater, strongest wrestler, or best joke teller like I did (and lost on all accounts).  Second, he doesn’t have to share Dad’s attention for his lacrosse and football games.  And third, he is close enough in age to eventually date both of ...

I love to laugh Loud and long and clear I love to laugh It's getting worse every year The more I laugh The more I fill with glee And the more the glee The more I'm a merrier me Most of what I've read about Pompe Disease and fatigue relates to respiratory issues.  According to pompe.com, "Most people with Pompe disease eventually experience breathing difficulties. These difficulties may start out mild, and it may take some time before patients or doctors recognize them.  Pompe disease often results in a weakened diaphragm, the large muscle located just below the lungs that plays a crucial role in breathing. A weakened diaphragm makes it hard to breathe deeply and get enough air into the lungs, especially when lying down, ... eventually leading to respiratory insufficiency." 1      Fortunately, our girls have performed well on their PFTs (Pulmonary Function Tests) to date and have even shown improvement in some areas.  ...

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...