Chatham-Kent's Ronny "Tuukka" Betterley is the face of courage.
The 6-year-old boy who lives between Blenheim and Ridgetown, is bravely battling a very rare form of cancer called DIPG.
Its official name is Diffuse Intrinsic Pontine Glioma, which is a highly aggressive and difficult to treat tumor that is found at the base of the brain.
Ronny's mother, Anita Betterley, says it all happened very quickly.
"It looked like it was a lazy eye and within two weeks of noticing that we took him to the Children's hospital in London and basically within 48 hours of that we were told the unfortunate news that he has DIPG," says Anita. "Right now he is handling the treatments really well and he has been taking his meds without complaining -- we couldn't ask for anything more at this point."
News of Ronny's diagnosis in March spread quickly through the community, especially because of the Betterley family's ties to the South Kent Minor Hockey Association.
https://www.youtube.com/watch?v=PrnHi5lqJII&feature=youtu.be
"The community is totally amazing," says Anita. "At the beginning I was worried that we would be overwhelmed, but it has turned out that we are overwhelmed with blessings."
One of those blessings included a trip to Boston where Ronny got to see his favourite team -- the Boston Bruins -- in action.
After the game, Ronny even had a chance to meet Bruins goaltender Tuukka Rask and Bruins forward Brad Marchand.
(Photo courtesy of Anita Betterley)
That trip to Boston is just one of the highlights of the past month for Ronny. He has been a busy making memories with his family in between treatments.
"They tell you, 'Make the memories,' and that's what we're doing," says Anita. "It's just amazing -- in today's society even with all of the bad things that are going on, there are great and wonderful people still in this world... and we definitely need to focus on that."
While they are spending a lot of quality time with Ronny, the Betterley family is also working to raise more awareness about DIPG -- especially because it is so rare.
When the family was first told about Ronny's diagnosis, officials at the Children's Hospital in London also told the Betterley's that the hospital only sees about two cases of DIPG each year in southwestern Ontario. Anita says children who are affected by DIPG are usually 4-10 years old. She says some research is being done, but it's still in the early stages.
"From everything we've seen and what we've been told right now too, there is still no cure," says Anita, adding Ronny has been doing better than expected during his treatments. "They keep saying the radiation is supposed to make him tired -- we're halfway through and we're not seeing him being tired at all."
Anita also has one piece of advice for parents and families that she wants to share: "Take each day at a time and live in the moment because sometimes you don't get your tomorrow."
You can follow along with Ronny's journey on Facebook.
There's also a Dinner & Silent Auction fundraiser at the Willow Ridge Golf & Country Club in Blenheim on Saturday, April 29 at 5pm. You can find more information by clicking here.