Tuesday, September 21, 2010


I, I will be king

And you, you will be queen

Though nothing will drive them away

We can beat them, just for one day

We can be heroes, just for one day

Though nothing, will keep us together

We could steal time, just for one day

We can be heroes, forever and ever

What d'you say?

When I was younger the word hero seemed to be more in style.  I had heroes all around.  They were Dr. J of the Sixers who could slam dunk like no other, the astronauts heading off into space, my father who was able to fix anything personal or material, the fireman who came to visit our school, and the entire Justice League.  Green Lantern was my favorite, but I don't remember if it was because of his cool ring and outfit or because my older brothers already chose the other ones.  (Sorry for the Super Hero diversion, back to the subject.)  Today, the "Hero" title seems tougher to achieve.  While many of us agree that the firemen who raced into the World Trade Center and the men and women fighting overseas are heroes they tend to shy away from the title.  Perhaps because they just don't see themselves that way.  They are just doing their job.

So, what does the word HERO mean to you?  The beauty is there is no right answer.  It is an individual choice based on your experience which may evolve over time.  Some heroes come and go and some heroes are here to stay.  When asked to write a paper on the subject, Emma composed the following. I wanted to share it with you because you have not heard about this experience in her words and because I think these heroes are here to stay.

Emma: September 2010
My idea of a hero differs from others. Many people say their heroes are celebrities or sports players and though I do have those, I have other heroes also. These heroes have affected my life without even knowing it. They are just people going throughout their lives but have changed mine forever.

Last February, I was diagnosed with Pompe’s disease along with my sister, Madeline. Pompe’s disease is an extremely rare, genetic, progressive, degenerative muscular disease. Though the news was devastating, Maddie and I were determined not to let it stop us from doing anything we wanted to do. Through the tears of both happiness and sadness, I came across my real heroes. To them I am just a client, or a patient, or someone they work for and though they may forget me over time, I know I will never forget them.

The first person is David O’Connor. Along with being my Genzyme representative, he is also a deacon and with his spirituality, he can turn anything around and make it positive. He has such a caring heart and helping people with disabilities is his passion.

The next person is Kate Carpenter. She is my child life specialist and has become one of my closest friends. Though on paper Kate is supposed to entertain me while I get my treatments, she is so much more than that. Kate radiates happiness and humor, which makes my treatments so much easier.

The last person is Dr. Carsten Bonneman. Dr. Bonneman was not my doctor for long, but during the time I was his patient, he really was an inspiration. Pompe is his passion and when I am with him I do not feel like a patient, but like a friend. 

All in all, Pompe has changed my life in ways I never imagined, but I would never change it. It has led me to these fantastic people. 

Well said Emma.  I agree 100%.  Each and every interaction I've had with these three people has left me with a warm heart knowing that we are blessed to be in Philadelphia and blessed to have found CHOP.  They are heroes, but like others they don't see themselves that way.  They are just doing their job.  Today you learn that they are more, much more.

So at age 41 who are my heroes?  I've been fortunate enough to meet some great people in my days, but after all this time I realize no one comes close to my three kids.  Their strength, conviction, and love for each other is inspiring.  While some heroes may come and go, they are here to stay.

We can be heroes

We can be heroes

We can be heroes

Just for one day

Keep up the fight!
Matt Crowley

Credit to: David Bowie "Heroes"

Friday, September 3, 2010

All Together Now

One, two, three, four
Can I run a little more?
five, six, seven eight nine ten miles I love you.

A, B, C, D
Can you run along with me?
E, F, G, H, I, J, I love you.

Boom, bam, boom,
Ooh my hip,
Boom, bam, boom,
There goes my knee,
Boom, bam, boom,
The finish line,
Boom, bam, boom,
Look at me!

All together now, All together now,
All together now, All together now,
All together now, All together now...

I'm a runner. All the signs are there... running shoes littering the garage, worn out 5K race t-shirts in the closet, the occasional aching knees, and the wish that maybe one day the passion to run a marathon will appear.

Sometimes after miles and miles on the road I've wondered why I run. Seriously, why do people purposely leave the comfort of their sofa to find themselves miles from home with only a pair of worn out sneakers to get them back? Perhaps part of the reason is the adventure, part is to lose a few pounds, part is for therapy, or maybe part is also for something much more important. Maybe it's a way to prepare yourself for that noble moment when you decide to sacrifice yourself for the benefit of others.

That special moment came to my nephew and niece earlier this year when they decided to help two girls for whom running is no longer an option. Sure they can run from home plate to first base and maybe from one side of a soccer field to another, but never in a 5K, never in a marathon. You see, while Pompe does not limit their beautiful minds, it does limit their ability to complete some physical activities. Their muscles just are not strong enough and even if they struggled, the pain at the end is not worth it. There are many more ways for them to shine.

Knowing all this, my nephew and niece set off with a goal to raise money for Pompe Disease. They picked a race, started to train, convinced a few family members to join, and set off on their Long and Winding Road to race day. For several months they followed their program, running day after day, while spreading the word about the event. On August 15th, five members of my family ran in the San Diego Half Marathon. For 13.1 miles they ran All Together Now in love for two girls who mean so much to them. The race was a great success with money coming in from California to Pennsylvania to Canada resulting in over $2400 for the AMDA.

So why do I run? For years as I pounded the pavement I was not sure, but now I know. I run for those who can't run because of this crazy disease. And, I run for the hope that maybe one day I too will be prepared to follow in the footsteps of five mighty ones before me who sacrificed themselves for the benefit of others.

We remain All Together Now... All For Two And Two For All!

With eternal thankfulness,
Uncle Matt

Credit to: The Beatles, "All Together Now"

Here's a few photos from the event.

The shirts

The runners showing off their race medals!

The runners and their support team.