Second Annual World Rare Disease Day School Event

Our family being interviewed last year at Vanderburg's WRDD event.

What a difference a year makes.

This time last year, we were preparing for Vanderburg Elementary School’s first World Rare Disease Day event.  To our family, this was a HUGE gift from the principal and staff of my kids’ school.   The entire school left their uniforms at home that day, and over 90% of them wore jeans to school.   Jeans for Genes Day!   It was absolutely incredible.

Hannah was the star of the event.   Sharing her adorable smile and just pure happiness with many of the students and staff at Vanderburg as well as a reporter from our local newspaper.   She just charmed everyone that day!

Fast forward to this year.  It is somewhat bittersweet knowing that we will be going back for this event again, but Hannah is not going to be with us.   It is a bitter pill to swallow, but this event is so incredibly important.   It is even more important know that Hannah is no longer here because not only do we get to share her story again, but we help educate the school kids and staff at how important it is to fight for kids like Hannah whom are affected by genetic diseases that no one has ever heard of because they are so rare.

Tomorrow morning I meeting with the staff to share our plans for this event as well as hand out the hundreds of ribbon making kits donated by the Global Genes Project.

Last year, I was able to bring Hannah with me to meet the teachers and staff at Vanderburg to go over the game plan for the event.  They were able to meet the sweet girl they were helping us fight for.

Tomorrow morning, it will just be me sharing Hannah’s story.   I don’t know why I am nervous.   I am not usually nervous talking in front of people, but many of these people were able to meet Hannah last year.   They know that she has passed away.   But now her story has changed, and it is isn’t the way we wanted it to change.

My Hannah.  She was the fighter.  She was the one that made me want to be a fighter.   I just wish she was here to give me those smiles and cuddles that made this fight so much easier.


  1. As both a school teacher AND someone who lives with a rare disease (almost exclusively limited to children until relatively recently), this brought tears to my eyes! From the bottom of my heart, I thank you for all the work you are doing to raise awareness and also for your courage to continue sharing Hannah’s story. Being diagnosed with a terminal, rare disease is a difficult pill to swallow, I think most of all for the mothers and fathers of those affected. But more than anything else we need to be able to remove the word “terminal” from our equations…and it is only through raising awareness, research dollars, and support that this can be done. My heart aches for you. You’ll have those Hannah smiles and cuddles endlessly in heaven (I know it doesn’t help now, but maybe years from now it can bring peace). Blessings, Jessica

  2. Hannah will be there with you. You will feel her sweet spirit, you will have courage and strength that she is giving you.