Gift of Life is “Too Big for Words”
Little Deven Shelton fought for survival more in his first two years of life than most people do in a century of living. Before Deven’s second birthday, his many hospital stays included being placed on a ventilator, undergoing surgery, dialysis, 15 blood transfusions, and slipping into a coma. At one point, Steve and Amanda decided “Deven’s little body and soul had gone through enough” and took their son off all medications and machines. “Deven, however, stayed with us.” In the meantime, though, Deven had suffered extensive brain damage. The doctors told the Sheltons that Deven would not be able to walk, use his arms, show any emotion, or communicate with them.
“Life after Deven’s transplant has been a miracle…”
Deven was diagnosed with a severe case of Ornithine transcarbamylase (OTC) deficiency, a rare genetic disorder, resulting in too much ammonia in the blood. At 20 months old he was put on the transplant waiting list and soon received a new liver.
“Life after Deven’s transplant has been a miracle,” said Steve. “A huge weight has been lifted from us.” About 85% of Deven’s damaged brain cells have regenerated themselves. Not only can Deven smile, he laughs hysterically when watching the movie Madagascar. Not yet five, Deven participated, with his walker, in the 25m dash at the NKF U.S. Transplant Games this summer. “There was not a dry eye on or off the field as the crowd cheered Deven on to the finish line,” said Steve.
Usually not an emotional man, Steve is moved to tears when he thinks about Deven’s donor and the donor’s family. “Our feelings toward them are too big for words.” said Steve. He wishes he could extend a “huge embracing hug” to them. One thing Steve can do is “pay it forward.” He had a tattoo drawn on his forearm showing one hand passing the Donate Life symbol to another hand, giving him many opportunities to discuss the importance of organ and tissue donation. “It is the least I can do after Deven’s hero gave us the miracle of life.”
