In 2001, Thomas Maxwell “Max” Dickerson was born with autosomal recessive polycystic kidney disease (PKD). He was born seven weeks early, weighing just 5 pounds, and immediately faced life-threatening obstacles. In addition to damaging his kidneys, PKD also caused Max to have liver fibrosis and his spleen was enlarged many times its normal size. Though he was small for his age, Max’s belly looked like that of a severely malnourished child.
His mother, Emily, remembers that he was really sensitive about his belly and worried about kids making fun of him. “He just wanted this surgery so much so he can look like other kids.” For years, Max had to wear a guard around his abdomen during recess or any other vigorous activity to protect his spleen from rupture. “He looked like a little Ninja Turtle, which was cool to him in a way, but he really didn’t want to wear it,” Max’s dad, Jeff explained. Max’s parents were told their little boy would need a liver and kidney transplant. He may also need a multivisceral transplant, which would include multiple digestive organs, to survive.
Jeff explains, “Upon actually being listed, the transplant team described thoroughly what the steps were to be when “the call” happens. But, of course, there was no way for them to totally prepare us for the overwhelming excitement / anxiety that develops when crunch time comes. Joy, that the opportunity we had been waiting for had come, mixes with fear of the unknown during the 3 hour drive to Riley Children’s Hospital in Indianapolis.
After a long, courageous battle, Max got the transplant he so desperately needed.
“We know that without someone else’s loss, we would not have been given the opportunity to save our son’s life. Our donor family MEANS THE WORLD TO US! We believe they are the symbol / essence of generosity. They showed us compassion in the midst of acute and immense sorrow. They now must be, we hope, part of an enlightened group of human beings that know their loved one helped many others obtain great happiness.”
“I can play the rough stuff now,” says Max. His teachers explain how much everyone loves Max, and how he lights up the room when he walks in. Jeff agrees that his son has a special something that makes his personality sparkle. Max excels at math and reading, and also enjoys conquering a good Lego set. He constantly wants to be busy, and especially loves the outdoors, his friends and basketball.
“Before this experience, we believed what most others do, that there are many people in need and waiting on lists to transplanted. But that was the extent of it. Since no one very close to us had ever had to go through it, we assumed it to be a rare thing,” Jeff says. “If I had a message to send to the public about organ donation it would be ASK NOW!! In the event that tragedy takes your life, but not your organs, would you donate them to those in need? We believe asking, and more importantly, answering this question in the absence of extreme emotion must yield decisions that favor organ donation. DON’T WAIT!! Join the Kentucky Organ Donor Registry today.”
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