*V*O*T*E*

VO*TE

It is yet another opportunity for you to help us fund research for Sanfilippo. The parent group, Team Sanfilippo, is competing for a $250,000 grant from Vivint. We are currently holding onto the second place spot, but we still have weeks of voting ahead of us. It is easy to vote, as long as you have a facebook account. Simply *like* Vivint. Then click this link: http://www.vivint.com/givesbackproject/charity/1471 or search for Team Sanfilippo in the Vivint Gives Back Project. Cast your vote. It is that easy. Then each day, vote again - it takes mere seconds. Share the link on your wall and ask your friends to join you.

People are always asking how they can help. This is an easy and free way to help our family and all of the other families who have children with Sanfilippo. There is currently no treatment available to our kids, but there is some exciting research in the field of gene therapy.

You can vote once per day thru 8/27!!

Comments

Jenna said…

Hi
my name is Jenna and I came across your site. your kids are amazing, beautiful handsome and cute. They are courageous, strong and determined. they are brave warriors, smilen champs and inspirational hero's. I was born with a rare life threatening disease, and love it when people sign my guestbook. www.miraclechamp.webs.com

July 17, 2011 at 6:50 PM

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.