A YEAR OF TRIUMPH

Published 12:00 am Wednesday, June 6, 2007

Evan Spence is a name that is not unknown in Demopolis. When you meet the tall, skinny teenager, it&8217;s easy to see that there is something special about him. He is easy to talk with and is even easier to like. With a guitar in one hand and a smile on his face, I had the pleasure of meeting one of Demopolis&8217;s success stories.

While many in the community may know him as the liver transplant recipient, it is important to note that he has come quite far from his experience with Crigler Najjar Syndrome, and is enjoying his break from all the attention.

A year ago, Spence was being taken to Pittsburgh to have a consultation for evaluation on liver transplant surgery. Now, he is back in Demopolis enjoying the summer and looking forward to being a senior in high school.

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He is spending the summer working as a sales associate for Radio Shack.

In addition to helping people with their questions on the floor, he also does whatever is needed in the back.

Last month, Evan and his mother were able to attend the 2007 Symposium on Transplantation for Crigler Najjar in Pittsburgh. In addition to meeting others like himself who have been diagnosed with the rare liver disease, he was able to speak briefly about his experiences.

While in Pittsburgh, Spence was able to meet with Dr. George V. Mazariegos, the surgeon who performed his surgery last June and Dr. Holmes Morton, who is a nationally-known surgeon who studies Crigler Najjar exclusively. He was also instrumental in getting Spence on the transplant list so quickly.

According to Joan Spence, Evan&8217;s mom, everything about his condition looks great. While there were some earlier complications, such as three different bouts with Cytomegalovirus, his liver has not had any rejection so far.

He still goes for monthly visits to have his blood work done at Bryan Whitfield Memorial Hospital. From there, they are able to send the results to the Children&8217;s Hospital in Pittsburgh, where they are constantly monitoring Spence&8217;s condition.

Spence said that his doctors told him that if his numbers stay good, within a month they will be able to lower his medications again. This is a welcome relief for someone who has been on medication since before the surgery last year.

Most people in the community know of Spence&8217;s budding music career with the band &8220;Eliza Burning.&8221; Spence said that the band is undergoing a transition period.

He still practices regularly with the singer, bassist and drummer from the band.

It is clear that music is very important in Evan&8217;s life. Last fall, he continued to play with the marching band as a bassist, even when he had an IV attached to his arm.

Joan Spence says that Evan&8217;s future plans probably include studying his first year out of high school at the University of West Alabama in Livingston, where he hopes to study to become an audio engineer.

She tries to keep an eye on him because she says the doctors treat his condition like they would a heart transplant patient. They need lots of rest and should avoid any situations that might make them sick because their immune systems are weaker than normal.

But just like any mom, she is learning to let him grow as he moves on in his life as a prosperous young adult.