CHICAGO (CBS) — The parents of a courageous 6-year-old boy with an extremely rare disease have been on a crusade to help save other children nationwide.

CBS 2’s Dave Savini looked into the life of a boy named Max and his parents’ fight for a cure.

Max Lacewell, nicknamed “little dude,” was always laughing, a fun-loving boy dreaming of becoming an astronaut, and a Lego master.

But then, suddenly, he started having trouble controlling his eye. After a series of tests, he was diagnosed with an aggressive tumor that attacks the center of the brain stem.

“I started to cry and he goes, he said, ‘Dad, what’s wrong?’” Max’s father, David Lacewell, recalled. “And I said ‘Buddy, it just hurts me so bad to see you hurting.’”

Leanne Lacewell said, “He probably said ‘I love you, mom’ at least a dozen times a day.”

Max was struck by DIPG (Diffuse Intrinsic Pontine Glioma) – a brain cancer so rare that only about 100 children get it each year in the United States. They don’t live long after they’re diagnosed, typically less than a year.

Because so few children get it, little has been done in the form of research to treat it.

“He said, ‘But I’m not ready to die, I’m only 6,’” Leanne recalled.

Doctors did all they could and, in 2009, after a nine month struggle, Max died.

The Lacewell’s have devoted their life to raising awareness and funds to fight DIPG.

“We want to create the Max Lacewell Scholar. That will be an individual that will be dedicated to the research on Diffuse Intrinsic Pontine Glioma,” David said.

The Lacewells donated Max’s brain stem and spinal cord to Chidren’s Memorial Hospital, where he was being treated, for research of DIPG.

“It’s an opportunity for us to sort of channel these feelings of hopelessness that we have had and, perhaps, gain some hope,” David said.

“I want everybody to remember Max, I want to honor Max.” Leanne said. “He was an incredible little boy ”

Another family also recently donated their child’s brain and progress has been made at Stanford University in treating this cancer.

The Lacewell family hopes to raise $2 million in the next five years through a series of fundraisers.

The first one is Saturday. You can find out more about it and DIPG at Savini will be emceeing the event, along with former Chicago Bear Donnell Woolford.

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