I met Curtis through a organization I joined for professional photographers called "The Littlest Heroes Project" where you donate your time/talents to give a family dealing with serious or terminal illness a free photo session with their "little hero" :) I was SO excited to be able to be a part of this and give back so when I got the call that there was a family near St. Louis wanting a session I was happy to make the trip! The following is from his website which helps family and friends know how he is doing:
as of 4/08 Curtis now is at 3mos cognitive and fuctional level, he has 'brain freeze' moments(where his brain slows down so much he can no longer function-swallow,walk,etc)he has severe migranes and trouble tracking objects. as of 5/30 his new dx added is neuro-degentive dystrophy. That's a fancy way of saying the dystrophy is destroying his brain as well as his muscles. We're not ashamed to say we fight these battles on our knees.
this is the beautiful "thank you" his Mom left for me on the same website after our session last Sunday:
I want to send out a big thank you to Kara for taking such great pics of Curtis and the crew. You are one of the earth angels,in my book. All day I prayed please Lord let her get at least a couple of pics with Curtis being aware. And do you know what- not only was he aware he smiled really big for her. It was great. Kara you have given us such a wonderful gift. These will be something we can look back on-when the time comes that he can't smile anymore. Everytime we look at these pics I will be blessed over and over again because of the wonderful thing you have done. Thank you just doesn't seem to be enough,but it comes from the heart.
Sharon- I feel lucky to have met and worked with your family. I admire your strength and your courage through all you deal with on a daily basis....but I have seen Curtis smile so I can see exactly how that alone could keep you going! :) Thank you for giving me a small glimpse into your life as it touched my heart in a beautiful way! My thoughts and prayers will be with you through your journey.............Kara
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Please be sure to e-mail felicia@littlestheroesproject.org with his site, story, and photos we can include him on our website! The pictures are beautiful!
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