EAST LANSING - "Our son charlie was diagnosed with an inoperable brain tumor on the first of April 2011," describes his father and Michigan State University professor John Waller. "From the day that he was diagnosed we were told that he would have probably about six months, maybe nine months to live."

Prior to the diagnosis, he was falling down for about one week before that, he had a slight language delay, he had difficulty sleeping, but there was nothing much really to indicate a brain tumor," said his mother Abigail Waller.

"Unbelievable shock when you're told that your child is going to die," said Charlie's Grandfather and Art for Charlie Executive Director Richard Graham-Yooll. "So everyday was a gift from then on"

"We did explore a couple of experimental treatments, but there was no benefit from those," said J. Waller. "With this tumor in particular, you’ve got the one shot at radiation, and then after that you just have to make the absolute most of the child's life after diagnosis."

"He had such an amazing capacity for like adventure and imagination," described neighbor and family friend Melissa Fore. "He would set up these entire worlds in the backyard with little sticks and stones and pirate worlds and his imagination was just unmatched I think."

"For siblings, it is often so so difficult because they're losing in many cases their best friend," said John Waller. "A young child is going to really struggle to make sense of what’s happened. They’re going to ask questions like 'is it me next?' Could I have what my sibling had?' She (Esther) knew that charlie would one day die, I suspect at one level she didn’t believe it. It was going to be very important for us and also for our daughter and charlie, to have the community rally around. and we wanted everyone to know that we wanted them involved. We wanted them to be apart of our live, and also Charlie's life. So we set up a foundation, and we had an enormous rummage sale at the People's Church, to begin with, but there were also a few donations of artwork, really beautiful artwork, that we decided not to put in that sale, and it made sense to try and have an art show, an art auction, and so we did that, in July of 2011 and it was a spectacular success."

"That was the beginning of realizing that we could raise money through art, that art was an attractive medium, cheerful, to raise money," said Graham-Yooll.

"And after that we decided that we would establish the foundation Art for Charlie," said Waller. "We now raise money for a variety of purposes, the first one, is to provide financial support for families who are in financial distress, as a result of having a child with a terminal diagnosis, or life limiting illness. But also to support those families who have lost a child and they need the space to mourn. We want to ensure that children with life limiting illnesses in the state of michigan have access to adequate palliative care, and also to hospice when they need it. My fear all day long, was him suffering unnecessarily. Hospice is a really superb movement. its allowing people to pass away with dignity.
When he passed away, he passed away at home, surrounded by people who loved him, and people that he loved.

He was once in the car with Abby, and he said to her, I don't want to be a ghost. She then said, don't worry Charlie, you can become a superhero, and his response was to go 'yessss.' That was very like Charlie. He could never be low, for very long. He had this enormous natural exuberance, which is always ready to spill over."