Now, even though I have already shared Tripp’s story, I wanted to give just a little bit of a follow up.  Recently I had the honor to travel back to Louisiana and participate in the Hammond Christmas Parade.  Tripp Roth was named Grand Marshal and not only did I have the privilege to help design and decorate a float that would honor all of those who have suffered from EB, I also had the honor of riding with Courtney and helping to represent Tripp.  It was something that was so very special and something that I will never forget.

As I was making preparations here in Minnesota for the float, it was very important to me that these precious angels be recognized in some way.  I have been touched by so many of their stories and I wanted to share their light.  The “Butterfly Tree” was born.  So, we put together a theme and I got to designing different elements making sure that everything coordinated.  I was doing everything except the ornaments that I so desperately wanted.  I was procrastinating and I knew it.  As much as I wanted to honor these babies, I knew I would be embarking on a very emotional journey and I was not quite sure if I was prepared.  Needless to say, I eventually took that first step and reached out to some parents not quite knowing what their response would be.  Well, I was overwhelmed with what I received and for the first time my trepidation about doing the ornaments left me.  However, as I began to open each email, it hit me…hard.  I was faced with the heart break of EB as I opened each image to see a precious child who battled this terrible disease and lost.  Babies who behind their beautiful smiles suffered needlessly.  If I did not know their stories, I found them and I read each and everyone.  My heart was broken, but I became more determined to fight for these angels.
When the ornaments arrived, I looked at each one and as I tied its ribbon, I made a promise.  I promised  to fight for them, I promised to never give up.  I made that same promise as I tied each ornament on the tree.

 

The tree turned out amazing and it was such a privilege to be able to honor and represent each and every one of these precious little butterflies.  You can see more pictures here: Hammond Christmas Parade

Over the weekend, I also had another opportunity to spend time with Courtney, her amazing family, and Tripp.  He was of course as precious as ever.  Saturday night after the parade, we all went back to the house and Courtney prepared for another bath.  I thought about the day and I thought about each and every single face on those ornaments as I watched Courtney and her mom gently removing Tripp’s dressings.  I looked at his small, frail little body and I watched as he shook in fear and in pain; once again my heart was broken.  I felt helpless, I wanted nothing more than to pick him up, cradle him and take his pain away.  Once again I watched as his tears streamed down his precious face and I watched his mommy comforting him and in that moment I prayed.

This entire experience has caused me to pause and think about what is really important.  As the holidays approach, I am often asked what I want for Christmas.  My Christmas wish is this:  I want awareness, I want a cure.  I want the suffering of these children to come to an end….I want and end to EB.

Amazing research is being done at the U of M and you can learn more about it at http://www.puckfund.org.  The holidays are often a time for giving…I would encourage you to visit P.U.C.K.’s site and consider making a donation.  The proceeds go directly to research and brings us closer to a cure.  Thank you and Merry Christmas.

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