Jeremy taught us how to be thoughtful, courageous, and happy.
Jeremy was diagnosed when he was 5 years old after years of wondering why he wasn’t keeping up physically with his peers. There was little information about MPS at that time and even less by way of treatment. However, in 2001, when he was 11, we travelled weekly to Vancouver, BC, Canada from our home in Salt Lake City, Utah to participate in an Enzyme Replacement Therapy being trialed. He was eager and willing to be a part of this drug study, knowing that it may not work or might even harm him. He did it because he wanted to make life better for others after him. He may have done it for all the free ice cream his nurses gave him, too! At the end of the study, it eventually got FDA approval and he became one of the first recipients of Aldurazyme, and continued with the infusions nearly every week until he passed away just one week before his 30th birthday. He loved bright colors, especially purple, tie-dyed rainbow shirts and fierce dragons. He was a Harry Potter fan and he read all the books until his eyesight made it difficult to read, then he listened to all his favorites on audio books. Jeremy always had a smile, a positive outlook on life, and a willingness to do difficult challenges without complaint. He completed a Service Mission for the LDS church, taking the bus 20 miles from home every day to help in the Ogden Family History Library for 2 years no matter the weather. He was the first to introduce himself and become your friend, and he was loved by all who knew him. He was truly an unsung hero and lived his life to its fullest, and he is missed very much.
