“Hello. My name is Cameron,” said the programmed touch screen device. This was how young Cam, affected with PKAN, learned to communicate as he lost his ability to speak.
One afternoon in school, the teacher heard a tooting noise followed by silence. Then, the tooting noise again. The teacher addressed the classroom and let the students know that if someone needed to go to the bathroom, now was the appropriate time to do so. The guilty party remained silent, and the tooting continued. Finally, another student pointed towards Cam. He was the culprit! Cam had located the “fart” button on his automated device, and he wasn’t going to miss this opportunity to use it. With all that Cam’s PKAN brought on, he still had a sense of humor and the desire to make all those around him laugh.
It was at an NBIA family conference that Cam’s moms first learned about brain tissue donation. NBIA researchers spoke of the value to be gained from studying the tissue of affected individuals. This piece of the puzzle was an integral part in finding a cure for NBIA. Difficult as it was to consider for their vibrant son, they began to think about it.
The last three months of Cam’s life were spent in three different hospitals. When he came home, as painful as it was, Cam’s moms made the decision to donate his brain tissue. They looked beyond that moment of pain and considered the bigger picture. This gift from Cam could alleviate pain, improve lives, and potentially save so many with a cure for NBIA. Cam would have wanted all of that.
Cam’s parents reached out to Allison, from the NBIA Research Group at OHSU, for advice on how to proceed. Allison put them in touch with the University of Maryland Brain and Tissue Bank. From there, the Brain and Tissue Bank communicated with Cam’s physicians, nurses, and hospice care. Once Cam’s parents made the decision to donate, everyone else took care of the logistics. They could focus on spending their time with Cam.
Nine days after coming home from the hospital, Cam passed. Cam’s moms spent an hour with him, and then let him go so that his gift could have the greatest impact possible.
“Because I knew you, I have been changed for good.” – From the musical “Wicked”
This phrase is fitting for Cameron. Cam changed people’s lives for the good, and his gift continues to change the lives of others he never even met.
Copyright © 2014 by NBIAcure.org. All rights reserved.