A Difficult Reminder: Why We Fight and Why We Dance.

At every event Jadon’s Hope has hosted, we honor SMA kiddos from across the country.  These kids are the entire reason we do anything and everything we do as a foundation.  We feel it is incredibly important for our supporters to know who they are fighting for.  Simple cards showing bright, smiling faces that highlight very complex lives.  Faces of our courageous Warriors and Angels.

As we get caught up in event planning, inevitably these cards are put off until the last moment and it begins to feel like a task that simply needs completion.  However, the “burden of completing the task” is always overtaken by the honor of the fight.

There always seems to be that moment.  That moment when the work disappears and the shining faces touch our souls.  Suddenly, we understand that we are lucky to know these kids, to understand these kids, and so very lucky to fight for these kids.  We fight to make a better world for those fighting SMA and to one day see a world where SMA does not exist.

That moment often triggers the waterworks.  This year, the sweaty eyes were uncontrollable when one particular card was created.  Brianna has been a smiling warrior for each of our events.  We met Brianna on Facebook shortly after Jadon’s diagnosis and she was always a great source of information and overwhelming inspiration. We were blessed to meet Brianna in person while in Madison WI over two years ago. Living close to Madison, Brianna and her family would often travel there to meet SMA families who traveled to see SMA specialist Dr. Schroth.  When she learned we would be there for Jadon’s trach surgery, she insisted upon coming to the hospital to meet him.  Brianna was a spitfire and seeing her Facebook posts, her smiling face and constant words of encouragement were a gentle reminder of who we should strive to be.

Brianna’s title changed from Warrior to Angel on January 13^th of this year.  She finished her race against SMA here on earth and flew home to be with her creator.  The task of typing Angel beside her name was too much to hold back the emotions.  As SMA parents we know without a cure, that inevitable day will come, but we try not to think about it.  Let me tell you, it doesn’t work.  Brianna lived on this earth for 15 years and showed us all how to live and love.  She reminded us that all it takes is one to make a difference in the lives of so many.  She reminded us that life lessons are NOT always taught by adults.  She showed us how to Dance in the Rain and she will never be forgotten.

We will continue to run in her honor.