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"