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
Thursday, March 19, 2009 4:30 PM CDT
Hi Guys,
I know I have not updated. Sammie is doing great and is back at school. Let's pray the decompression holds and we do not have to go back in and do fusion. Please God.. Sam needs a break! But she is healthy and Happy! Thank you GOD!
Sad News update from the LA Run world.... Both Noah Scott and Carolyn Faust died on Saturday. Noah's service is tomorrow and Carolyn's is Saturday. The Faust Family moved to NM in 2006 so I will not be able to attend her service but since most of their family is in CA, I think they are flying to CA next weekend to have a dinner. I hope to attend the dinner in Carolyn's memory.
It has been an ugly week for the National MPS Society. As we have lost 8 children. Please keep all our MPS/ML children and their families in your prayers!
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