Wednesday, April 25, 2012

A little sunshine, a little hope...

Isn't is amazing how your life's path can be altered simply by "chance"?  Really, is it all just coincidence?  I happen to think it is not by chance at all, I happen to think that there is a plan that is unfolding, a plan set in place long ago.  Opportunities present themselves for a reason.  I have had so many doors open for me and so many opportunities to allow my life to be touched in special ways and I truly believe that it is not just luck or coincidence.  It is much more profound than that. I know that this is part of my purpose and there are some who do not understand and that is okay.  All that matters is that I understand, I follow what is in my heart and that I believe in what it is that I am passionate about.

Throughout this amazing journey I have been fortunate enough to meet some pretty extraordinary people and yesterday was no exception.  Charlie Knuth's spirit is one that can truly lift the heaviest hearts and light up a room in the most beautiful way.  He just sparkles and it is completely contagious!
Yesterday Charlie gave me a gift that was very much needed.  Seeing him and being swept up in his joy gave me a sense of hope that I think that I desperately needed.  His smile told me that everything that I believe in and everything that I fight for is worth it.

Two tears ago Charlie was suffering terribly and he was covered head to toe in bandages to protect his fragile skin.  All of the things we take for granted we re luxuries for Charlie.  Today, Charlie is an exuberant little boy with boundless energy because his mom and dad fought hard so that he could be a part of the clinical trials in Minnesota.  They fought hard to give Charlie hope and to give him a chance to be a kid.

One look at him and you can see the tremendous amount of happiness that he exudes...

Thank you Charlie for bringing me so much joy and giving me such a remarkable gift.

Charlie was not the only ray of sunshine in my day yesterday.  I would like you to meet Sahar, she is one of the sweetest little ladies and even though she is suffering, you would never know it from her beautiful smile.

Sahar is just over 60+ days and her journey is far from over.  I would love for you to take a moment to get to know her and visit her page: Sahar's Caring Bridge
As with many families going through this process, they are struggling emotionally and financially. 
A fund has been set up to help Sahar's family with medical bills and that information can be found on her page.

Sahar and children like her deserve a chance, a chance to be a kid.  They deserve a life without blisters and bandages; a life without pain.  Please take a moment to visit to learn about how they support the research in Minnesota and you can also visit the University of Minnesota Pediatric Blood and Marrow Transplant Center to learn more about this research.

If you would like to learn more about Epidermolysis Bullosa, you can visit

The time is can make a difference, you can be a part of the cure.


  1. this is one of the most beautiful things anyone has ever said....thank you.

  2. Christie,

    You are truly an amazing soul. The EB community is blessed to have you as part of our family. May GOD continue to bless you for all that you do for everyone.