Community rallies around ‘Master of Awesome’

A Hamilton family is coping with a child with terminal brain cancer, but community support and some special church pews are making their spirits brighter.

On the afternoon of Christmas Eve, Hamilton musicians Tom Wilson & Mimi Shaw sang to a 14-year-old whose hospital bed is set up in his living room next to the tree.

Brigitte Soares is the mother of that youth, Isaiah Ritchie. “Isaiah doesn’t say much nowadays but for him he was really happy, he was really touched. He loves music. It was really nice for him to have people singing with him, things like that… it was great.”

The bed hasn’t been here long. In September, Isaiah started high school. He was in the band, about to try out for football and was planning the purchase of his first car. In October, he started vomiting and getting dizzy — and it got worse from there. The family learned Isaiah has a rare type of children’s brain cancer called DIPG.

“Most tumours are in a ball, and they would sit somewhere in your brain. This tumour, the way the doctors have described it, it grows kind of like a weed. It’s not contained. It grows through all the nerves.”

“It’s really hard for him to speak nowadays, he’s so exhausted. It’s even hard for him to sleep because a lot of the time DIPG affects their optic nerves a lot, so sometimes his eyes will want to shut when he doesn’t want them to, or open when he doesn’t want them too.”

Kids usually live for less than a year after the diagnosis. The only treatment is radiation.

“The radiation is supposed to slow the tumor down, and they say that it will more than likely start growing again within, there’s a median time of nine months.”

Now Isaiah’s story is spreading through the community.

The James St Baptist Church was bought by a Toronto developer in June and it will eventually be part of a new condo tower. In the meantime the developer is selling off these original pews and giving the proceeds back to the community. People are calling them the pews that keep on giving.

Maggie Steele is the church realtor. “At the same time that I was asked by Stanton (the developer) to find a local family to help at Christmas, another client told me he was holding a silent auction in a church in the east end for a child with brain cancer and the family, so I thought ‘well, let’s connect the two together’.”

It started with generous gifts; then came the living room concert.

“I didn’t realize there were people out there like that still.”

The family now has a new group of friends to spread awareness — the campaign is called “The Master of Awesome.”

“Isaiah calls himself the Master of Awesome. He’s a very gifted kid. He’s always been out there. He does a lot of amazing things.”

There is a Facebook page called Master of Awesome – Isaiah Ritchie — that’s where the family has begun raising awareness about this rare disease and raising funds for a group of researchers who have been gathering information on DIPG. There is really very little information available to parents, except for several heartbreaking web pages parents have set up to remember their DIPG kids.