Daniel's Hope
Daniel's Story
   
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I am happy, full of life and hope.
 I love to laugh, sing and watch
others dance.
I never complain about things
I can not do. 
I just love life!
(Oh, and Daddy is my best friend)

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On February 14, 2007 Daniel aspirated on an oral vaccine during his six month well baby check. Daniel’s pediatrician immediately  had him rushed to Primary Children’s Hospital in Salt Lake City. Even though the aspiration cleared, his pediatrician insisted that they evaluate him for “low muscle tone.” 

Daniel was diagnosed with Spinal Muscular Atrophy (SMA).  His specialist, Dr. Kathyrn Swoboda, was very certain that Danile suffered from SMA.  This diagnosis was verified with genetic testing.


SMA is a motor neuron disease. The motor neurons affect the voluntary muscles that are used for activities such as crawling, walking, head and neck control, and swallowing.  Daniel has Type I SMA which is the most severe form.  Most Type I babies pass away before their 2nd birthday. 

We were devastated to learn that he had SMA.  We were blind-sided by the diagnosis.  We knew that there was possibly a problem but had no idea that it could be something so devastating.  Neither of us had ever heard of SMA. 

Since Daniel’s diagnosis we have had to educate ourselves about this deadly disease.  Everything in our life has changed dramatically.  Even a simple trip into Salt Lake City has now become complicated by taking medical equipment with us and pre-planning for any emergency that my occur while away from home.

 

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Daniel’s smiles and spirit have inspired us to do every thing we can to help him sustain life…as long as it does not take away from his quality of life. 


Each day we reach out for information and support from other families affected by SMA.  Each day we receive wonderful letters of support from our family, friends and from strangers.  Each day someone says that they are praying for our family.


We ask that you educate yourselves as much as you can about SMA.  We ask that you share our web-site with anyone you can.  We are determined to spread the word about Daniel and this disease.


Thank you so much for looking at our web-site and please visit again for updates!

Established May 6, 2007. Dedicated to Daniel Sacripante, his family, and many friends.