Daniel's Hope
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With my Daddy!!!

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On the salt flats with my friends, Abbee, Tylee and Jayden!


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With Abbee!

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I'm Back!

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Bed Head!

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Saturday, November 28, 2009

Thanksgiving

Hello everyone,

 

This is Daniel’s Dad, Justin. It has been a while since I’ve wrote. Daniel just had the best visit with Grandma and Grandpa for Thanksgiving. Grandma held Daniel a lot and even gave him a hair cut, and then Elmo visited! Please check out the video links at the bottom of the home page to see Daniel’s unforgettable expression.

 

Things seem to be falling into place for all of us as we approach this holiday season.  We are becoming more settled in our new home. We have been isolating for a few month’s since the H1N1 season hit. We are all finally immunized and will be letting Daniels therapists back into the home for regular visits; Daniel is very excited about this.

 

We are very excited about the cutting edge research coming out of California for SMA. We believe Hans S. Keirstead of UC Irvine may possibly hold the key to a possible cure for this devastating disease. We hope that the FDA approves his clinical trial of stem cells on human SMA models soon.

 

Thank you for reading and hope to speak soon.

 

Justin.

  
9:09 pm mst 


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Daniel did very well on our trip to the Dominican Republic.  It was a long trip there and back but he was a trooper.  We did need the oxygen in flight so we are so greatful to Rich from Bennett Medical Services in Elko for loaning us the oxygen concentrator.  A very big THANKS goes out to Marilyn and her co-workers at Delta Airlines here in Salt Lake City.  Marilyn made our trip so much easier and sent us away with so much love and support.  She was also here to meet us as we flew back into Salt Lake City.  Marilyn's mother, Kathleen, made Daniel a special "jungle themed" quilt.  Daniel loves it!  As you can see by his pictures with Marilyn, he just loves her!

We met two other families while in the
Dominican Republic who were there for treatment.  Pictured here are Mathew and his parents, Neal and Susie.  They were so friendly and helpful!  We hope that we see them again soon!

Daniel's treatment session went well.  Daddy was allowed to start his IV, which I am sure made Daniel feel a bit safer.  We were allowed to lie with him in the hospital bed and the whole procedure only took a couple of hours.  The clinic staff was wonderful, especially Dr. Rader and his wife Debra.  We could have not asked for a better experience.  It is a little early to see improvements or progress but we have noticed some extra movement in Daniel's legs.  We try to get him into the pool as much as possible since he is able to move a bit easier there.  As you can see from the pictures, he loves the going to the pool!

We encourage all to write to us for more information regarding his treatment.  We try to answer emails as fast as possible! 



*Please check out "Daniel's Pics" page for pictures of his trip*