2nd Place

January 07, 2011

2nd Place

We are in 2nd place!!! Please continue to vote EVERY day. We have to remain in the top 2 spots in order to win the grant. Voting lasts the entire month of January. Please post on facebook, twitter, blogs, etc.

THANK YOU!!

Comments

Anonymous said…

Hello Shannon,

I would like to thank you for everything you are doing to raise awareness about Sanfilippo syndrome. I also have two Sanfilippo children and because I regularly visit your blog I found out about this project. I write a blog and thought It might be a good chance to help. I posted a note on my blog and was pleasantly surprised by the reaction of people . Facebook is a realy powerful social network. There might be a few thousand people voting for the project here in the Czech Republic. I can only hope it helps. Wish you and your family happy days and peaceful nights.

Monika Zavadilova

January 8, 2011 at 3:22 PM

Shannon said…

Monika,

Thank you so much for visiting my blog and leaving your comment. I would love to see photos of your children.

Thanks for sharing the link on your blog. We still have 24 more days of voting, but I truly think we can do it.

Shannon

January 8, 2011 at 5:12 PM

Monika Zavadilová said…

Shannon,
http://nasecestasmps.blogspot.com/2010/12/pozdraveni-od-zavadilu.html

This is us :)) Sara turned 5 last November, Jukub is 3.They were diagnosed in spring 2009.

Monika

January 9, 2011 at 8:38 AM

Welcome to Holland

By Emily Perl Kingsley

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland.""Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."But there's been a change in the flight plan. They've landed in Holland and there you must stay.The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.