Friday, June 3, 2011

Major Step Forward

Yesterday I got some absolutely mind-blowing news. The Jackson Laboratory, with whom Lisa, Silas' mom, has been working so diligently to get SMARD research going, yesterday got an anonymous donation of TWENTY FIVE THOUSAND DOLLARS.

I will give you a second to pick your jaw up off the floor.

Yep, that's right. Twenty-five thousand dollars. Unbelievable.

So what does this mean? This is a serious jumpstart to the lab being able to hire a post doc to work exclusively on SMARD. It is twenty five thousand dollars closer to answers. Twenty five thousand dollars closer to getting rid of breathing machines and wheelchairs and suctioners. Twenty five thousand dollars closer to Dakin and his buddy Silas being able to meet and dig up worms and leave them in their pants pockets, and jump in the beauty of autumn leaves...

Twenty five thousand dollars closer to Presley and Maddison meeting up in Paris and getting hit on by French men, or taking a backpack tour of Europe...
Today, we are twenty five thousand dollars closer to hope.

So to our anonymous donor, whomever and wherever you might be, please please know how much your generosity means to me, to us as a community. Please know I will never forget it. There are not words sufficient to properly express how I feel for you adding to that little flame of hope. I wish to heaven I could repay you, but I hope this will do...

video

13 comments:

Valerie said...

What great news. I love hearing when someone does wonderful things with his/her money!

Jodie said...

How freaking great is that?!?! I am so excited for the SMARD community!

ever hopeful mummy said...

amazing! you HAVE to believe in people, don't you? essentially people are good and kind and some are generous; I wonder if they realise how much hope they give?
great news!

Sara said...

My heart is absolutely SINGING right now to hear this!!!! AMEN!!!!
Love the video of Dakin at the end "Thank you very much" - ahhh!!! <3 Girl, he melts my heart!!
xoxox~
Sara

Catherine said...

Wow! That's incredible :) such fantastic news!

Catherine

PS did you get my email?

Shannon said...

Amazing news!!! Could Dakin be any cuter?? I sure don't think so!!

Devon said...

Catherine...I didn't get it! Did you send it to the gmail account on the blog? Try it again...maybe something weird happened.

Presley & Charlotte Gleason said...

I get tears and a burst of adrenaline anytime I think of this!!!!! And can I share your post on FB????? I think you put this sooooo PERFECT and I want to share it with EVERYONE!!!!

Presley & Charlotte Gleason said...

Oh wait, you dont have a share button on yours! dang it!!!

Greek Goddess said...

That's a precious video. I'm so happy for you.

Elisa said...

Hip, Hip, Hooray!!! My jaw is still on the floor! Just think, Devon, 4 short months ago we were planning to set up our own 5019(C)3 to raise funds to entice a scientist to research smard. Now not only do we have a brilliant scientist researching smard, but we have an entire team of wonderful people in Maine willing to open their hearts to help us raise funds so that we can have our very own scientist working full-time on finding a cure/therapy. Go team smard! Let's keep this momentum rolling!

Sue O'Neill (Casey and Colin's Mom) said...

That's wonderful! I hope the funding continues to grow for the SMARD community!

Victoria Strong said...

This is so, so incredible. And so wonderfully exciting! I know this research is going to lead to so many good things. Sending huge hugs.