Wednesday, December 23, 2009

The New Adventure

Madeline Jane Crowley is an 11 year old girl living in suburban Philadelphia who was diagnosed with Juvenile Pompe Disease on November 18, 2009. Maddie is a vibrant child filled with humor, energy, and wonder. She believes in her family, friends, doctors, and the magic that can happen when people dare to believe.

Her care is being lead by Dr. Bonnemann MD, Asst. Professor of Neurology and Pediatrics, at Children's Hospital of Philadelphia (CHOP), and includes a team consisting of a Genetic Counselor, Physical Therapist, Clinical Trial Specialist, Nutritionist and many others.

Maddie will begin treatment with Genzyme's Myozyme drug in January 2010. What this means, we don't know. But we do know that our family and loved ones will support her every step of the way. Whatever happens we will fight for our daughter and will succeed in helping her and many others battling this disease.

All for one, and one for all!

Sincerely,
Matthew and Donna Crowley

31 comments:

  1. Looks great!!! I couldn't have said it better...All for one, and one for all!

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  2. I will be with you every step of the way in thoughts and prayers. Love you lots!

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  3. Thanks for setting up this site. It will be a great "go to" for all family and friends that want to help but don't know where to go or communicate with each other. We will be with you every step of the way.

    All for one, and one for all! Go Maddie Jane!

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  4. Praying for faith and strength for all of you and your families. Thank you for educating us as well.

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  5. Wow! This website looks amazing..what an awesome idea! Maddie is one of the toughest kids we know and she deserves the universe and more!! Can't wait to see the places that girl goes in this world!

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  6. Let me tell you something you already know. The world ain't all sunshine and rainbows. It is a very mean and nasty place and it will beat you to your knees and keep you there permanently if you let it. You, me, or nobody is gonna hit as hard as life. But it ain't how hard you hit; it's about how hard you can get hit, and keep moving forward. How much you can take, and keep moving forward. That's how winning is done. Now, if you know what you're worth, then go out and get what you're worth. But you gotta be willing to take the hit, and not pointing fingers saying you ain't where you are because of him, or her, or anybody. Cowards do that and that ain't you. You're better than that!"
    - Movie Quote from 'Rocky Balboa'

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  7. We are all praying for our Maddie! Love to you all!

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  8. We love our Maddie Jane!!!ANYTHING we can do, we're there. This is an awesome tool in order to keep everyone posted...thanks for setting it up! This sweet girl is going to be teaching all of us how to be stronger...she's bound for greatness, you know!! XOXOXO

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  9. We suspected Pompe but were honestly afraid to intrude. Your website is wonderful... it took our breath away! I know this is not a journey you would have chosen, but you are an amazing family, and we are certain you will embrace this with your usual strength, grace, and spirit. Maddie's light shines so bright in this world, and if anyone can squeeze the positive out of an unknown situation, it would be Maddie. Thank you for including us. We will be following your quest with great interest and will be here for you anytime you need a little extra help!

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  10. We've been thinking of you all! Please know that our hearts are with you as you travel along this journey. We are here if you need anything at all!

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  11. Hard hit for you guys but you have taken some hard ones before and came through shining, just as you will with this.
    Love and wishes to you all Lee, Coral Karen and Shane

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  12. "What we actually learn, from any given set of circumstances, determines whether we become increasingly powerless or more powerful."
    Here is to blazing new trails! We will find inspiration and strength from the wonderful people who will write entries in this blog. Thank you for creating it.

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  13. We're Gonna Fight
    til we can't fight no more.
    Then we'll lie down
    and bleed a while.
    We're gonna get back up
    And fight some more.

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  14. Your family will be continually in our prayers. Maddie was always so friendly when I stopped at your home. She is a special girl. "Mercy, peace, and love be yours in abundance." Jude 1:2

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  15. Miss Maddie, you are one of the bravest little girls that I know! This will be a tough time for you, but please know you are loved and supported wherever you go! If you need anything, please let me know! I am sending positive thoughts and love your way! Miss DeNicolo

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  16. When I was living in California, I had the honor and privilege of working with Matt and Bill, which allowed me to get to know their families. Both families have so much love, spirit and positive energy; by being surrounded by all that love, amazing things can and will happen.

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  17. Dear Crowley Family,

    Our thoughts and prayers are with you. Keep your spirits up and stay strong.

    Merry Christmas,
    The Gardy Family

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  18. Miss Maddie and the Crowley Crew,
    Love, before all things love (someone wiser than I said it). Your family has a tremendous amount of love and faith. We are all behind you 100% with our love and faith too.
    God bless.
    The Giannascoli's

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  19. you can do it and you will always be in our prays

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  20. "A Native American Elder once described his own inner struggles in this manner: Inside of me there are two dogs. One of the dogs is mean and evil. The other dog is good. The mean dog fights the good dog all the time. When asked which dog wins, he reflected for a moment and replied, "the one I feed the most." - George Bernard Shaw

    Maddie, I asked Santa Clause to bring you "good Dog" food.

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  21. Please know that the Yahr family is praying for Maddie and the rest of the Crowley family. If you need anything please let us know.

    Merry Christmas,

    Linda and Ben
    Jonathan, Megan and Catherine

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  22. Not too long ago, I saw Maddie and said to someone that she was one of the "smiling safeties at UH". She is certainly a member of an amazing family as this site shows. Please know that we are one of many families in this community who will always support yours.
    ~ The Levines

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  23. Your family is constantly in my thoughts and prayers. Maddie, you are such a strong spirit, and I am so proud you! I am here to support in any way that I can. I'm sending positive thoughts your way!

    I hope you enjoy the holidays! I'll be thinking about you.

    Love, Mrs. Irrgang

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  24. I believe in the spirit of Christmas. I believe in Magic. I believe in you Maddie Jane. Merry Christmas.

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  25. A pessimist sees only the dark side of the clouds, and mopes; a philosopher sees both sides, and shrugs; an optimist doesn’t see the clouds at all – he’s walking on them.

    Leonard Louis Levinson

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  26. Crowleys,

    As you get ready for your journey, please know one thing...We are with you guys!!!

    Maddie is going to play this one better than she plays "The Grinch" on her fiddle!!!

    Love, The Hoffmans

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  27. Donna and Matt,

    Your blog for Maddie is beautiful! Maddie, along with the rest of your family will be in our thoughts and prayers daily! Hang in there and always look for the rainbows.

    Love ~ Robin Johnson and Family

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  28. "Life is a storm, my young friend. You will bask in the sunlight one moment, be shattered on the rocks the next. What makes you a man is what you do when that storm comes." Alexandre Dumas

    Be strong. We will be there with you.

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  29. Dear Maddie

    I have known Your mom since she was a little girl. I have not met you but I do know this, your mom is a strong woman and I know that you must be every bit as strong as she. This journey may not be as you or your family had planned, but I hope that you can learn and grow from it and inspire others with your experiences. I wish you success health and love in your life and that of your family. I will spread the word out in California. You have my most solemn prayers and very best wishes.

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  30. Dear Crowleys,
    Our family will be thinking of you always and checking this great blog for updates on beautiful Maddie! Keep strong and possitive!

    All our love,
    The Damiaos

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  31. Love you maddie and miss you so much. Wish you were in Vacaville. We're praying for you!<3

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