“At 7 years old, Ethan was a happy, healthy and very intelligent child. He had the most wonderful sense of humor and loved to make others laugh. He loved baseball and the Phillies.
In November of 2008, Ethan’s walking became unsteady, his speech became slurred and he had double vision. I immediately took Ethan to his pediatrician. In December 2008, after an MRI, we received the diagnosis… Diffuse Intrinsic Pontine Glioma, a rare aggressive tumor inside of the brainstem. There is no cure or effective treatment. Life expectancy is only 9-12 months. I can never express in words just how devastated I was at the thought of losing my precious little boy.
By the end of radiation, Ethan was very much back to himself. We lived more in that 14 months then most do in a lifetime. Ethan played little league, went on several trips and spent lots of time swimming, riding his bike and just being a kid.
In August 2009, Ethan was given the opportunity to meet his hero, Phillies’ second baseman Chase Utley. Chase took the time to talk with Ethan down on the field before a game. Ethan had told me over and over again how much he wanted to ask Chase to hit a home run for him. As shyness got the best of him he whispered and asked me if I would ask Chase for him. Chase’s reply was that he would try. Ethan beamed. That night as we watched the game, Chase came up for his second at bat of the night and sent one out of the ballpark. The look on Ethan’s face was one I will never forget. He told me that was the best night of his life.
Over the next few months, Ethan’s symptoms returned. Ethan was in a wheelchair and had no control over the left side of his body. About this time I recalled something my Mom had said. She lost a son, my brother Max, when he was 8 years old in a car accident in 1963. She wished she had been able to donate Max’s organs. So as Ethan’s condition worsened, we considered donation. In 2010, Ethan slipped into a coma. A recipient was located for Ethan’s kidneys and with his parents and stepparents by his side, life support was removed and Ethan passed away. He was 8 years old.
I miss him every day. However, I can’t express to you how glad I am that Ethan was able to save someone’s life. The recipient of both of Ethan’s kidneys is finally living his life free of dialysis. Two men now have sight after receiving Ethan’s corneas.”
– Michelle Burgess, Ethan’s Mother
Be a life-saver like Ethan