My blogs

About me

Introduction	My name is Trey. I turned 9 years old this past April. I live in Arizona with my Mom, my Dad and two big brothers Drake and Broc. At two years old I was misdiagnosed with a life threatening genetic disorder known as MPS VI. Months of testing and a visit to my new doctor’s in Minnesota brought me to my correct diagnosis of MPS IV-A. While there was no cure nor treatment for MPS IV-A the first three years, I was part of a Clinical Trial for my disorder that recieved FDA Approval on Valentines Day 2014. I flew to and from Oakland, CA every Thursday for almost 3 years to receive a five hour infusion therapy. My prayer is that these trials will help my organs and bones and extend my life expectancy beyond my original diagnosis. Although I endured 43 weekly infusions (essentially for “nothing”), I am so thankful that prays were answered and that my weekly travels helped to bring FDA approval of the enzyme replacement therapy of disorder...hoping this will vastly benefit my little body.

Introduction

My name is Trey. I turned 9 years old this past April. I live in Arizona with my Mom, my Dad and two big brothers Drake and Broc. At two years old I was misdiagnosed with a life threatening genetic disorder known as MPS VI. Months of testing and a visit to my new doctor’s in Minnesota brought me to my correct diagnosis of MPS IV-A. While there was no cure nor treatment for MPS IV-A the first three years, I was part of a Clinical Trial for my disorder that recieved FDA Approval on Valentines Day 2014. I flew to and from Oakland, CA every Thursday for almost 3 years to receive a five hour infusion therapy. My prayer is that these trials will help my organs and bones and extend my life expectancy beyond my original diagnosis. Although I endured 43 weekly infusions (essentially for “nothing”), I am so thankful that prays were answered and that my weekly travels helped to bring FDA approval of the enzyme replacement therapy of disorder...hoping this will vastly benefit my little body.