The previous post was from Andy, Max's Dad. I was on vacation for the past five days (flew back tonight)...I found out this morning via my iphone internet that Max had passed away (I checked Max's blog daily).

The night before I had left on vacation, Wednesday, August 27th, I shot Max. It was a last minute thing that Melis and I had decided to do...my kids and I would go over to the Mikulak's for a "play date", in an attempt to be with Max for an extended period of time and hopefully catch some of those precious, but fleeting, smiles of Max's.

When we arrived, around 4 PM, Max was sleeping and he remained sleeping for most of the time we were there. Melis had to wake Max up at 6 PM for some medicine. And between 6 and 7 PM, I was able to shoot Max doing two of his favorite things, with a smile...playing his computer game and selecting one of his new aircraft dogfight movies. After shooting Max choose one of his movies, he said, No pictures, while I'm watching TV. That's enough. And then we left.

I will miss him so much. He truly was an amazing child and such a gift to this world. A few photos from this past Wednesday, my last day shooting Max.

Max playing his computer game



Max deciding which of his new dogfight movies he was going to watch first.


And from the first time I met Max...the sweetest boy ever.


I will miss you buddy. I will miss you so!

11 comments:

  1. And we are missing our precious little warrior!!
    Annee Ranee

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  2. I'm so sad.

    Sometimes the miracle is in the ending of his pain and suffering.

    Praying for this precious angel and the family he's left behind.

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  3. My heart is heavy. Lots of love to you and their family.

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  4. yes, a very very heavy heart. such a special boy, special family. hugs and many many prayers for strength and courage, hope and healing.

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  5. Deb~
    You did such a wonderful job introducing us to Max through your photojournalism and photography. I almost feel as if I know Max personally. You have brought awareness and a face to this awful disease. You are truly amazing.

    Heather Sphar (Kate Sessions Elem)

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  6. Oh how I am going to miss seeing these beautiful pictures of Max. Deb - I'm hoping that you have some "out takes" from your sessions that you haven't shared before that you can share... just a thought...

    What an amazing gift you have given to the Mikulak family. All of those amazing photos of Max on his courageous journey, and those precious fleeting smiles toward the end.

    And what an amazing gift you have given to Magic Waters as well. You have brought Max to life for many, many people and have made strangers into friends, all while raising awareness of this horrible disease. I know I'll be donating.

    My heartfelt prayers go out to everyone feeling the impact of this tragic loss, especially to the Mikulak family.

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  7. "standing still"

    The loss is not yours alone, she said & you will see it in their eyes when they do not think you are watching. How long does it take? I said & she put her hand on my chest & we did not speak.

    -the storypeople

    to the mikulak family + my dear friend deb - i've been following max's story and it was with a heavy heart that i read yesterday's post. may you be surrounded by peace, encouragement and love in the days ahead. we are praying for each of you.

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  8. Heartfelt prayers go out to the Mikulak family, to Deb and to all who have been moved by Max's courageous and inspiring story.

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  9. Deb, unlike anyone, you captured the special sparkle in his eyes. His smiles geniune. Colleen Monaco

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  10. I am just paralized with sadness. I can't even begin to imagine the loss that these parents & siblings feel. I am crying just by knowing him through you, Deb. He had so much strength and such an amazing spirit. Your photographic gift has allowed this special boy to touch & forever change the lives of people who have never even met him.

    Peace and love to all who have been touched by this special boy and his incredible family.

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  11. What an amazing gift you gave this family. It sounds like he was an amazing child.

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