When lethal diseases take the lives of children, the words "awareness" and "cure" become more meaningful.
Sadly, it happens too often and many affected families are working to both make us all aware of the illness and the need for a cure.
The tumor, Diffuse Intrinsic Pontine Glioma, (DIPG), infiltrates the brain stem, and is lethal and inoperable.
Jordan Malave is a fun-loving, happy kindergartner dearly loved by his family. His joyousness hides the fact that an ugly tumor has settled deep in his brain.
"In all of pediatric neuro-oncology, in all the tumors that affect the brain and spinal cord in children, it's one of the worse, without question," said Dr. Mark Souweidane, from New York Presbyterian- Weill Cornell Medical Center.
Surgery is impossible for this tumor. Chemotherapy and radiation are also ineffective.
Jordan had one symptom treated this week for fluid buildup in the brain.
"They make a hole in the brain so that the fluid can flow out from another direction, I can't let him see me cry cause it affects him," said Leeane Castro, Jordan's mother.
Public relations executive John Rivera knows too well what Jordan and his family are going through. Cristian, his own 6 year old son, lost his life to DIPG in January of 2009.
"It's devastating. You could imagine. No one loves anything more than they love their children," said John.
John has turned his pain and loss into activism. Soon after his son's death, he set up the Cristian Rivera Foundation, raising money for research in this disease.
"I don't want to see any child suffer the way that Cristian suffered," he said.
Funds from the Cristian Rivera foundation are supporting Dr. Souweidane's research, which is ready to move beyond the lab.
He's finalizing plans to start a clinical trial with a novel treatment method, which uses small hair-like fibers that deliver medicine directly into the tumor.
"It will be very good news and hopefully a cause for hope for a lot of these kids and their," said Dr. Souweidane.
For now, Jordan continues his joyous life, just being a kid and going to the park and to school.
"The pain it caused Cristian as well as me and all his loved ones is something I don't think any parent should endure," said John.
Every week, two to five families in the United States lose a child under age 9 to this tumor. On Sunday, the Cristian Rivera foundation will have a fund raising walk at the Roberto State Park in the Bronx.
For more information on the fundraiser and how to help please visit the links below: