VACAVILLE, Calif. (KTVU) - It started as a fever, and they thought it was strep throat. Two months later Greg and Jessica De Grange were told their oldest son Charlie had terminal brain cancer.
The diagnosis came last July, one week before his 8th birthday. They were then told they would have 12 to 18 months more with him.
"It's a monster," says his father Greg. "It's called Diffuse Intrinsic Pontine Glioma DIPG. It's a zero percent cure rate."
But the story of the De Grange family is not just one of pain and of tragedy but also of love and family. In the hospital, in the days following that diagnosis something remarkable happened.
Charlie decided on his own to donate part of his tumor to research.
"He knew it wouldn't help him but it would help other kids like him," says his father Greg.
His mother Jessica says he always thinks of others and his decision didn't surprise her saying "he doesn't want this to happen to anyone else."
DIPG is a brain tumor found in the pons which is part of the brain stem. According to the DIPG registry, most children are diagnosed between 5 and 7 years old. It's rare only making up about 10-15 percent of all brain tumors in children and in the U.S. there are just 100-150 new diagnoses every year.
The De Grange's say they want to raise awareness and raise more money for research. Meanwhile, they are determined to enjoy every moment with their son.
The family describes this past year of their life as "awesome."
"This was the best year from July through now has been awesome," says Charlie's father Greg.
It may seem so hard to understand how his family could call this year amazing, but you need to consider how they've chosen to spend it.
"This is how we are going to attack it, we are going to live everyday with him," says Greg.
Both Greg and Jessica quit their jobs. They moved from Fresno to Vacaville to be closer to family and doctors and now spend every moment with Charlie. They home school their four children, Charlie, Garrett, Miles and Juliana. Some days Jessica says they just have rest days and spend hours just cuddling on the couch.
Charlie smiles and laughs a lot. When he asks his younger brothers to be a target for his Nerf gun, they smile and readily agree. When KTVU asked him what his favorite things are, he answered with a grin "video games and girls."
But he didn't want to talk about his tumor. He said, "I just want to be normal."
It's impossible not to have your eyes fill with tears when you think of the injustice of all of this, but his parents say Charlie made them promise not to cry. So they try very hard not to.
The last year has been filled with big moments, like a Make-A-Wish trip to New York to see skyscrapers, and a bonding session with Raiders Quarterback Derek Carr.
He loves baseball, and wants to try gymnastics and writes amazing little books about his favorite things.
His father calls him, "his superhero."
His mother says "he's already all the things you hope you raise your child to be."
He is undergoing an experimental treatment. It doesn't matter what the statistics say because his mom says she, "can't stop fighting and praying that he'll be the first to survive. I can't stop believing that."
So they move forward, because they can't stop the clock. They laugh because they told him they wouldn't cry. They appreciate every moment because they don't know how many they will get.
Last week Charlie asked to see a priest and then after that meeting told his Mom he was ready for the next round of treatments.
"He's not scared. He believes in God and in Heaven," says his Mom as she once again fights back the tears, "I don't have to be scared for him. I just have to be scared for how I'm going to live the rest of my life without him."
Parties interested in making a donation to help the De Grange family can help through this YouCaring website.