On this journey I am constantly being moved and touched in ways that I often cannot describe.  Every encounter profoundly impacting me and inspiring me.  It was just over a year ago when I learned about Tripp Roth, just over a year ago when I chose this path, not knowing where it would lead.  I never imagined this journey would take me so far and provide me with so many blessings.  Never could I have ever prepared myself for what I would experience this past week.  Once again I have been changed.

Picture Courtesy of Laurie Sterner of LJS Photography

I can still hear Jonah yell my name with that huge cheesy grin.  Oh how he would run to me when he saw me.  I am not sure who was more excited, him or me!  That boy warms my heart and fills me with such tremendous joy.  He has this way about him and it is definitely something very special.  He has this energy that is incredible…it is almost as if it is his way of saying he is not going to let EB have control.  He is amazing and I love him for so many reasons.  I have read his story and found strength in the words of his amazing mommy Patrice.  To finally meet him and have an opportunity to experience first hand his incredible spirit and the love and joy that flows from him was truly a gift.  I miss him so much already.  You can follow Jonah’s Journey at Patrice’s blog… Before the Morning

Photo courtesy of Laurie Sterner of LJS Photography

One of the first little guys I got to see was Raul. Well he just captured my heart.  Take one look at this smile and you will no doubt understand why I love this little guy.  I am so in awe of his “mommy” Caroline and all that she does.  It truly is powerful to watch this young woman fight for this little boy and do whatever she can to provide him with a better life.   You can find out more about this sweet little guy on his site My Romanian Butterfly

The reality is each and everyone of these children and adults have touched me in so many profound ways.  Just look at these faces and you will see beautiful spirits and the most amazing light that emanates from each and every one of them.  My words simply cannot describe it, but it is my hope that I have been able to capture it… 

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There was something else that moved me this weekend aside from meeting all of these amazing people and having an opportunity to connect them.  I would like you to meet Anton…he is very special.  I was once again blessed with the honor of photographing one of the most intimate moments…bath.  As I have always said…it humbles me to be trusted in this way and it really is an honor and a blessing to share in this.  Anton, is incredibly brave…as are all of those who face EB daily.  I will share more about Anton and this experience in another post.  It was pretty special and needs its own post to do it justice.

As write tonight, my heart is so full.  It is full of love, for I have seen it in such a rare form.  It was in the eyes of every child, in their smiles and in their laughter.  I saw it in the parents a they watched their children discover new and old friends in a place free of judgement, a place where they belonged.  In those moments, they was joy like nothing I had ever witnessed…it filled me with an equal joy.

This week has been so incredibly overwhelming…in such a beautiful way.  I spent the days laughing and smiling watching these beautiful spirits.  My nights were filled with tears, some sad and some happy, as I thought of all of the families and what they endure.  As I reflected on each day, I thought heavily about why I am here and was struck with such emotion and desire to do more.

I would like to personally thank Brett Kopelan and DebRA for providing me with this incredible opportunity.  It has most certainly been something so unforgettable and awe-inspiring.  I am so very blessed again to be a part of this community and I hope that I can continue to help make a difference in the lives of all of those who face the struggles and challenges of EB.  I now have so many more reasons to keep fighting…

You can find out more about EB and DebRA at www.debra.org

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