Sea of Denim at Vanderburg Elementary School!

The World Rare Disease Day event at the kids’ school was a HUGE success.   I would even dare to say it was a massive, extraordinary, amazing success.

When we got to the school with Hannah at 1:30 pm, we saw quite a few kids playing on the playground.  About 90% of them were wearing blue denim jeans!  The entire staff wore denim jeans too!

We started off at Ethan’s class first, and the kids in the class were all working hard on their bracelets.  Not only that, but there were at least 5 parent volunteers that wanted to help and be a part of this event.  As soon as they saw Hannah come into the room,  they all said, almost in unison, “Hi Hannah.”   Ethan came running over, and you could see the excitement in his face that we were there.

Mitch Truswell, who does the PR for the Children’s Specialty Center, was there along with reporter, Jeff Mosier from The View magazine, a local weekly newspaper.  It was great to finally meet Mitch in person, as we had been emailing back and forth for the past two weeks on these events.

We spent about 20 minutes in that classroom, and then we went to go to Abigail’s class room.  Unfortunately, they were at PE, but it worked out because we were able to sit down with the reporter for about 20 minutes or so while he asked us questions about Hannah, her form of Gaucher’s disease (type 2/3, not 1), as well as ask questions to the kids.

Ethan was so funny about it.   When the reporter asked him a question, he answered as if he was reading from this cue card in his head as to what he is supposed to say.   I wanted him to answer from his heart not what he thinks the reporter wants to hear.  Abby was a bit more shy, but she did great too.

Thank you, thank you, thank you to Ms. Maggiore (school principal), Jennifer (who spearheaded this whole thing), the entire staff, the parents who volunteered (and there were so many), Sandy at the Bead Jungle who donated her supplies and assistance without a second thought when we were down to the wire with timing, the companies that donated over 12000+ beads for the kids, Mitch, and most of all, to all the kids at the school for their incredible enthusiasm that they brought to this project!

There is even talk about making this an annual event at Vanderburg!

Hannah meeting the kids in Ethan's class. She loved being around the other kids!

If you want to see more wonderful pictures from the day, Mitch uploaded some to the Children’s Specialty Center facebook page.  Click here to check them out (and give them a ‘like’ too – they are the best thing that has happened to Hannah in this city!)


  1. isabelle says:

    Congratulations Carrie, What a beautiful day and beautiful way to sensitize kids and their parents to these rare disease that affect little kids, what a beautiful way as well to make her brother and sister feel special and be able to do something for their little sister, in addition to loving her. In addition, thank you for being so vocal about the need to do more research and get more funding for rare disease.

  2. Glad the day was a success.