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!!
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 Walk and Run LA 2007 Slideshow! Thank you all for making the event a wonderful success!!!!!!
www.mpsrun.com
Journal
Friday, September 26, 2008 4:59 PM CDT
OMG It has been so long since I updated the caringbridge site. Bad Tami!!!!
Well, Everything is going good with Sam. Her feet are wonderful and no new tumor growth in her left and her right is still stable. Thank you Dr. B at CSMC and Dr Fred at St. Judes!!!
As for her neck. She is fine. Just a typical MPS child and unless she starts showing more symptoms of cord compression we are not going to worry about it! Jacob is doing good. I am doing his ERT right now.
So really for the first time in almost 21 years I have gotten good news from a doctor. Holy Buckets. I am going to enjoy this for as long as it lasts. Which means in the MPS World as soon as I post this, the phone will ring with bad news. God Pray not!!!
My lack of updates are just because I have been working very hard on the 8th Annual MPS Society's LA Run. Please come out and support this wonderful cause. My children are very lucky to have a treatment. But sadly so many children with MPS, ML and related disorders and still waiting for that same hope. You can visit the website at www.mpsrun.com !!!!
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