WE’VE GOT T-SHIRTS
 
 
Recent News
Welcome to the Trey Purcell site for MPS II - a source of information and advocacy relating to Mucopolysaccharidosis type II, and the portal for the MPS II fund.  
 
Trey was welcomed into the world at BC Children and Women’s Hospital in Vancouver, BC, Canada, on March 1 of 2004.   He was in seemingly good health, but as his 1st year passed, we experienced increasingly frequent visits to health care practitioners for various minor ailments and concerns. Then, in February of 2006, tests were ordered on Trey’s liver and spleen.  So began an arduous series of appointments leading to the eventual diagnosis of MPS Type II - a rare and degenerative enzyme disorder also known as Hunter Syndrome (www.hunterpatients.com).  
 
The condition was considered terminal and no treatment existed.  
 
An enzyme replacement therapy (ERT) called Elaprase has since been approved by Health Canada (on June 14, 2007) and a number of other countries in the world.  Fortunately, with fierce advocacy and the help of supportive health care practitioners, people within the BC Ministry of Health, and Shire Human Genetic Therapies, Trey began treatment on February 5, 2007.  We believe that through nutrition, Enzyme Replacement Therapy, and alternative forms of medicine, Trey will live a long, happy, and fulfilled life.
 
There are other children living with MPS II who have not been as fortuitous. Unfortunately, although Elaprase is approved for use in Canada, due to Canada’s lack of an Orphan Drug Policy, this drug is not yet available for many Canadians affected by Hunter Syndrome (for more information, go to: http://www.raredisorders.ca).
 
ERT is a treatment that addresses many of the symptoms of MPS, but it is not a cure, nor is it 100% effective.  The MPS II Fund is in place to conduct fundraising, raise awareness, and support research in the hopes that we will find a cure so that families and children with MPS will not be limited by this difference.
About Trey
February 4, 2009
We had a party Monday to celebrate Trey being on ERT for two years! Also more VAD excitement and another anniversary coming up...
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About MPS II Events & Donations Mama’s Blog
   www.treypurcell.com  dcehak@telus.net   .   
604.222.2767
Envisioning a hopeful future for families with MPShttp://www.treypurcell.commailto:dcehak@telus.netshapeimage_10_link_0shapeimage_10_link_1
Links
 
 
 
 
 
 
 
Click here for tshirts
Donations to the MPS Fund can be made on the Events and Donations page, or for more information about the grants we fund, click here.
January 26, 2009
Trey’s surgery is done, we’re home, and he’s doing well...
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