Monday, May 6, 2013

Ichthyosis Day at the K

  My head is still spinning from all of the amazing support we had from our friends and family, and even complete strangers yesterday for Ichthyosis Day at the K.  I would say that our first fundraiser for FIRST was a success! We sold out an entire section of Kauffman Stadium to watch the Kansas City Royals take on the Chicago White Sox.  And after 10 full innings, the Royals won!!
  We started out the day with tailgating, in the drizzling pseudo-rain, and headed into the game, where they had a bunch of other kid friendly activities going on. And close to the end of the game, the sun actually tried to come out! At this point, we were tickled pink to see the sun, considering this Thursday we had snow. The first time in my life I remember snow in May.
  We had a total of 3 people affected with Ichthyosis at the game, Ashlynne, Jordan, and our new little friend, 14 month old Carter.  And we also had the family of another affected person present as well. We had friends and family that came from all over, including my aunt that came from Iowa whom I hadn't seen in years (I was super excited about this!).  I honestly think that Ashlynne felt like a princess this day, knowing that everyone was there to help support her and our cause. She even got to get her picture taken with one of the members of the "K Crew", which is basically the Royals' cheerleaders.
  She got to walk around the stadium, take in the fun activities, and I didn't see any of the self-consciousness or un-ease that I normally see in her. I think she really felt comfortable knowing that she had an entire army there behind her supporting her. It didn't seem that she even noticed any of the stares, or maybe for the first time in her life, she was comfortable enough that she didn't care!
Ashlynne having the time of her life!

  I had several people approach me and ask me questions about Ashlynne, about Ichthyosis, and about FIRST.  All in all, mission accomplished. We raised $2200 for FIRST, got a chance to spread awareness about Ichthyosis, and had an absolute blast doing it! I would like to thank everyone who participated in this amazing event. It has gotten me so motivated to encourage people to get pro-active about Ichthyosis, or whatever their particular cause may be. If you have something in your life that affects you the way Ichthyosis does ours, go out, and make a difference!!!

Tommy, the FIRST doll, traveled
all the way to KC
  We will be doing this again next year. We have some ideas on how we can make it a little bigger, in hopes of reaching more people. We hope to see you all there!!!


  1. Cora we had a great time too. We really enjoyed seeing Ashlynne enjoying herself!! I cant wait for next year. If you need any help with the planning for next year let me know, I would love to help.

    Heather Hoffman - Dill

  2. What a greet event - so glad Ashlynnecwasnt self conscious :) I am adding your blog to my resources page :)

  3. Of my gosh, I wish I would have found out about this prior To game. I live in KC metro.. ill be watching for this event next year! thanks for sharing!


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