Wednesday, December 30, 2009

Don't Hope For A Miracle. Make One.

Hello everyone,

Please mark your calendars. On January 22nd, the movie Extraordinary Measures will be in theaters. This is the story of John F. Crowley's search for a drug to save his children's lives who were diagnosed with Infantile Pompe Disease.

The movie website is Be sure to check the site for the trailer or on YouTube.

While we are not related to John F. Crowley (as far as we know today) the story and timing of the movie release are nothing less than serendipity. We hope the attention and success of this movie will continue to raise awareness of Pompe disease and lead to improved therapies and patient support.

We were in New York City this week and everywhere we turned Maddie spotted a sign promoting the movie. Here's a photo we thought you'd enjoy.

We wish you and yours a Happy New Year!
Matt and Donna


  1. Serendipity...the art of finding the unusual, or the pleasantly unexpected by chance or sagacity :) Reminds me of our wonderful adventures together in New York! Maddie, you are adorable! It looks like NYC was just as cold as last year!

    I am trying to get in contact with CBS Films in LA to help promote the movie...we will see if anything comes of it! Love you guys!!!
    All for one, one for all!

  2. We are so excited to go and support this movie and to bring awareness to this disease. Keep up the good fight!

    The Johnson Family

  3. Dear Maddie and the rest of the wonderful Crowley family, Thank you for setting up this website. We will definitely be seeing this movie. Please know that you are in our prayers and that we will do anything to help support Team Maddie!
    Karen, Pete, Danny & Kayla Bloodgood

  4. Pulling for you, Maddie ! Keep that great attitude.
    Donna Griswold

  5. When they make your movie I want the guy from Twighlight to play Matt.

  6. Maddie, you look great in NY, even if a little cold! I'll be thinking of you this week as you go to the hospital. Wish I could be there to give you a hug, but consider yourself hugged!

  7. As from us down under, we won't get the movie till way after you guys but it is definately on our must see list with number one priority.

  8. Our deepest fear is not that we are inadequate. Our deepest fear is that we are powerful beyond measure. It is our light, not our darkness, that frightens us most. We ask ourselves, 'Who am I to be brilliant, gorgeous, talented, and famous?' Actually, who are you not to be? You are a child of God. Your playing small does not serve the world. There is nothing enlightened about shrinking so that people won't feel insecure around you. We were born to make manifest the glory of God that is within us. It's not just in some of us; it's in all of us. And when we let our own light shine, we unconsciously give other people permission to do the same. As we are liberated from our own fear, our presence automatically liberates others.”
    Used by Nelson Mandela in his 1994 inaugural speech

  9. We will be at the movie with your family. What showtime are we going to? Karen Simpson

  10. Kalidasa:
    Listen to the Exhortation of the Dawn!
    Look to this Day!
    For it is Life, the very Life of Life.
    In its brief course lie all the
    Verities and Realities of your Existence.
    The Bliss of Growth,
    The Glory of Action,
    The Splendor of Beauty;
    For Yesterday is but a Dream,
    And To-morrow is only a Vision;
    But To-day well lived makes
    Every Yesterday a Dream of Happiness,
    And every Tomorrow a Vision of Hope.
    Look well therefore to this Day!
    Such is the Salutation of the Dawn!

  11. Susie O'DonnellJanuary 3, 2010 at 12:46 PM

    Dear Crowley Family,

    You and the John Crowley family have more in common than your last name, you are both extraordinary families. Maddie looks beautiful.

  12. “Being deeply loved by someone gives you strength, while loving someone deeply gives you courage.”
    Lao Tzu

  13. Patience and perseverance have a magical effect before which difficulties disappear and obstacles vanish. - John Quincy Adams

  14. Elie Wiesel:
    I have learned two lessons in my life: first, there are no sufficient literary, psychological, or historical answers to human tragedy, only moral ones. Second, just as despair can come to one another only from other human beings, hope, too, can be given to one only by other human beings.

    Good Luck today.

  15. Just as your family has been there for us, we are here for you... Looking forward to having lunch again with you soon Maddie!