Monday, April 22, 2013

2.2 Million Dollars for Cystinosis Research!

Thanks to the kind and generous donations of our friends and family, we were able to contribute $9,626! 

We were blown away by the generosity of all the people who donated.  When we first set up "Sam's Hope for a Cure," we expected we might raise $2,000 the first year.  We thought it would be pretty cool if we raised $5,000.  But we pulled in almost $10,000 with just a letter campaign!  Talk about amazing friends and family!  

On Wednesday we crammed one cooler, two suitcases, three bags, two carseats, a stroller, a diaper bag, and two wild children into our little Honda civic, then drove eleven hours to Newport, California for the Cystinosis Research Foundation annual conference over the weekend (we actually stopped in Hurricane, UT Wednesday night and finished the drive on Thursday).  

Since Sam is not potty trained when he's away from home, we stopped for diaper changes every 2 to 3 hours along the way.  Despite the diaper changes, he still kept soaking out of his pants so we arrived at our fancy hotel with one really excited and pant-less three year old boy and his smiley cheeto face baby brother in a horrifically smelly car.  The only option for parking was valet (I feel so bad someone had to sit in our car).   I think we brought a new culture to the hotel that evening.

On the night we arrived we met many families with children with cystinosis, and a few adults with the disorder.  It was pretty neat to spend a weekend with people who actually understand how our family lives on a daily basis.  I guess you can say we have the same "normal".  We didn't have to explain why our son wasn't eating his dinner or why he has a feeding tube, etc...  It was awesome to see Sam make friends with all the other little kids, like long lost siblings.  He and Hank are still best buds.   They ran amok pretty much the entire weekend.

On Friday and Saturday we were able to hear brilliant doctors share their current medical research findings.  It was amazing.  AMAZING!!!  More to come on that, but I just want to share that the Cystinosis Research Foundation raised $2 million this past year.  Over $400,000 of that came from families raising money in their communities.  A big chunk of it came from the Saturday night dinner and auction in Newport Beach.  ALL of the money goes towards research.  100%, thanks to the generosity of the Stack family.

Stephen and I were happy to give them the money we raised in our first fundraiser.  Thank you to all our wonderful family and friends!  We are truly grateful for the support that our community has given us.  Attending the conference has given our family hope and has also made us realize that a cure for this disease is within reach.  We truly do believe in a cure.

Because we were having so much fun playing, I didn't get any cute pictures of Sam with his friends.  Mommy fail.  We're hoping the event photographer took at least one or two pictures of Sam while we were there so I can steal one.

These are pictures from before we left.

Thursday, April 11, 2013

Dear Aunt Morgie, Easter went like this...

a delicious dinner and a delicious dessert.

mormor and lars

over 200 water balloons gone in ten minutes.

Jane and Nicholas

a dog.  an uncle Taylor.

an easter egg hunt and a jelly bean trail leading to jake and the neverland pirate treasure.

some cousins.


Friday, April 5, 2013

Guess Who?

Lars at eight months.  Sam at his one year birthday party. 

Alpha Smoot took the picture of Sam.  Allie, your photography is amazing.  They really do look a lot alike.  Presh.

p.s. Sam was diagnosed with cystinosis less than a week after this picture was taken.  Because of rickets, he couldn't put pressure on his hands like Lars has been doing for weeks now.    Today,  Sam is strong, energetic, and right now he is sharing his duplos with his brother.  He's really thoughtful... and a little bit bossy too.

we drive a red, radio flyer, ATW, all terrain cargo wagon. year 2011.

In Sam's head he is thinking, "just stop taking photos and pull us already". 
Sam. Lars. Reid. Henry.

We're always looking for peeps to join us so come on over.