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"


  1. This was one of my all time favorites. Love the song....love Bowie (not THAT way), and I love what Emma wrote. Your entire family is an inspiration to us all. You are all great. I want to mention one person that lacks press in all of this and that would be the lovely and talented Donna. She is always there with her quick witt, grace under duress, and obvious caring for the entire clan. But hey, like i said at first, you are all tops in my book.

  2. Emma, you are mature well beyond your years. I am sure you hear that a lot!! I really liked what you wrote, and I really like that song your dad referred to. You, and your crazy little sifter, and of course your cool brother mean a lot to my family whether it is soccer games, or just mexican dinners we always have lots of fun with you all. See you all soon.

  3. Carter's hero must be who ever invented hair products.

    Just Saying

  4. Dear Emma,

    It continues to amaze me how the statements, “things happen for a reason – it was meant to be – it is part of the plan” ring so true in our lives. It causes me to contemplate, what reason? What meaning? What plan? And, I know these are questions that most likely flow through your mind and many others, too; yet, we never take time to truly seek out the answer(s).

    I am humbled by your English paper and my heart was once again filled with overwhelming emotions of joy because of you and your wonderful loving family. By you authoring a paper on hero’s and taking a view that is unique, causing all of us to pause and take stock in our own lives, is testimony to me who the real hero is. By example of your words, your positive outlook, your wonderful disposition, your fighting spirit, and the love that you give to your sister and family are all true attributes and reasons why you are the hero. It is these wonderful attributes that I am able to possibly answer those questions and it is where I seek answers so often – through the Word of God. Cor1 14. “God is not an author of confusion …”. God, too, continues to author a paper on the hero’s in our lives, and you are my hero! In fact, your mom, dad, sister, and want-a-be hippy brother are all my hero’s.

    God has blessed me with you and your family – no confusion there. He continues to show me who the real (true) hero’s are in our lives through the blessings of meeting you. It is His plan and this is the plan we must follow. We must not ask, “Why”; rather and more importantly, to seek an answer to“What”. What are we going to do with this plan? What is the reason and meaning that we can gain from His plan? And, what are we going to do to continue to move forward?

    Although things may seem scary and sad at times, I believe you know that by focusing on the “What” rather than the “Why” will allow you to continue to move forward with the grace of God. And, please know this, “I will NEVER forget you over time.” And when those times seem scary and sad, please know that I remain there for you forever.

    “Things happen for a reason – It was meant to be – It is part of the plan”

    Thank you, Emma, for being you! I remain,

    Prayerfully yours,
    Deacon Dave

    PS Please tell Carter, it wasn’t me who wrote anonymously, “Carter’s hero must be who ever invented hair products” I swear!!! But, I LOVED IT! LM?O!!!!!!

  5. Take your protein pills and put your helmet on

  6. Coach Crowley is one of my heros!

  7. A hero is selfless.

  8. I think Emma is Unbreakable.

  9. No hero is immortal till he dies."

    --W.H. Auden,
    British-American poet

  10. Remember when you were at Top Gun out in California and that song "I need a Hero" came on?
    Your motorcycle was awesome.

  11. By the way, I love the new photo. Maddie is beautiful.

  12. I agree - I feel like our medical teams are heroes. The folks at Genzyme, Dr. Byrne, my nurses are literally saving my life.

  13. Julius Erving got his nickname "The Doctor" from a friend who played pickup games with him back in Roosevelt, Long Island. Julius called his buddy "The Professor" because he was always very talkative and argumentative on the court and gave long drawn out explanations for why he was always right with his calls. One day his friend returned the favor and called him "The Doctor" because of the way we could slice through defenses and "operate" on his opponents especially in a one on one situation. It was later shortened to Dr. J. by his Virginia Squires teammates in the ABA

  14. Each Green Lantern possesses a power ring and power lantern that gives the user great control over the physical world as long as the wielder has sufficient willpower and strength to wield it.

    Willpower and Strength / Interesting.