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!!!!!!
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