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Jacob and Samantha


Welcome to the Slawson update Page. It has been provided to keep our family and friends updated on their Enzyme Replacement Therapy. Jacob and Samantha have a fatal disorder called MPS1 (Mucopolysaccharidosis).
Now there's HOPE!

ERT (enzyme replacement therapy) has been approved for MPS 1 and the kids started treatment, June 2003!!!!


In 2002 Sami was diagnosed with Desmoid Tumors. She had surgery to remove the tumors, but the they returned after surgery. In Feb of 2004, Sami started Chemotherapy for a year. In 2005 we started RFA at St. Judes hospital in Memphis TN. She was treated for 2 years but the tumors could not be killed! So now we are working very hard to keep her feet. We will again do surgery but this time will remove all the skin and graft new skin to her feet in hopes to save her cute little feet and keep her tumor free!! Her skin graft surgery in 2007 was a success! In September 2008 Samantha started school full time and is having a wonderful life!

Both Jacob and Sami have weekly ERT treatments for the rest of their lives or until a newer treatment is found.

Sam is a fighter and is fighting two different diseases at the same time! That's my Sammie, She always has to do everything bigger and better than her brother!!


Please keep checking back on our progress as we embark on this new journey of treatment and Hope!

Check Out the MPS Society's Walk and Run LA 2008 Slideshow and all the slideshows on YouTube at www.youtube.com/mpsrun ! Thank you all for making the event a wonderful success!!!!!!

www.mpsrun.com



Journal

Friday, January 4, 2013 5:44 PM CST

Happy New Year Everyone!

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Hospital Information:

Patient Room: 909-223-7132--- Mom's Cell Phone

Contact us at
1407 Foothill Blvd #28
La Verne, CA 91750
Or Web Page At www.mpsrun.com

Links:

http://www.mpsrun.com    Our Yearly Walk and 5k Run for The National MPS Society
http://www.caringbridge.org/nd/allison/   Allison MPS1
http://www.mpsforum.com/forum/   MPS/ML Forum


 
 

E-mail Author: MPSwalkRun@aol.com

 
 

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Note: The foregoing information was authored by the patient, parent or guardian, or other parties who are solely responsible for the content. Such announcements or their content are not necessarily endorsed by CaringBridge, Inc. or any sponsoring agent.  This information does not confirm that anyone is or was actually a patient at any facility.
 
 
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