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This article was published 6/6/2014 (962 days ago), so information in it may no longer be current.
In Russell Listmayer's eyes there are changes every day.
The 12-year-old has arthritis in his eyes. It has caused a serious condition called uveitis: the inflammation of the inside of the eye that affects vision. Uveitis is responsible for 20 per cent of all cases of blindness and is less common in children.
Russell, named one of three ambassadors for the fifth annual Walk To Fight Arthritis on Sunday at Assiniboine Park, is taking a leadership role in informing, fundraising and fighting the disease. The other ambassadors are former Team Canada and professional volleyball player Wanda Guenette, 51, and Kelsey Forrest, 9.
"I was happy they picked me because I get to tell my story to everyone in the world and let them know that people at the age of three can have arthritis, it's not just old people and it's a lot more serious than many people think," Russell said after a baseball game with his Red River team where he was playing catcher. He's also an A1 hockey player suiting up at forward or goaltender.
'I get to tell my story to everyone in the world and let them know that people at the age of three can have arthritis, it's not just old people and it's a lot more serious than many people think... ' -- Russell Listmayer
"I get a lot of people who don't know that you can get it in your eyes. But they believe me, once I tell them a bit of what I've been through."
His vision has been permanently affected. He's had 10 surgeries to deal with a multitude of complications.
In both eyes, he's had detached retinas and cataracts. He has glaucoma from the immunosuppressive chemotherapy he's had to take during the past seven years.
He takes five different types of eye drops five times per day, and he's losing the nerves in his eyes from pressure and side-effects of medication. He wears contact lenses, instead of thick glasses, so he can participate in sports and blend in with other kids.
Russell was only five when his parents, Brandeis Orr-Smallwood and Phil Listmayer, began to suspect something was wrong. His eyes were sore all the time and his head would sweat profusely. A specialist gave the diagnosis and his journey began.
"He's our warrior. That's what we call him," said Orr-Smallwood.
"He's facing his 11th surgery and he's handling it with a lot of courage. He's been dealing with this since he was five years old. He never complains and he never stops fighting. I'm pretty proud of him."
Weekly injections of one of his medications can make him sleepy -- a side-effect he fights tooth-and-nail trying to not miss school and to stay in sports.
"I want to keep playing sports, and if I can, it will show that people fighting arthritis don't have to just sit there, you can do stuff like sports," Russell said. "I look at it like there's kids with cancer that have to go through much more and kids with diabetes who have to have needles every day. So I just keep my mind on remembering things like that."
His mom said there are tough days when he's exhausted from just trying to do what other kids do.
"That's frustrating for him because his body is slowing him down but he just pushes through. Russell goes, "uh-uh, I want to be 12 and play with my buddies," Orr-Smallwood said. "He'll hit a wall and just crash and sleep and sleep and sleep. Part of it is he's growing and part of it is he needs to let himself recuperate."
Determination runs in Russell's family. His uncle is Colton Orr, a forward with the Toronto Maple Leafs who came into the NHL as an undrafted free agent, and his older brother Kruz is a defenceman drafted by the Swift Current Broncos of the Western Hockey League who may play there or with the Manitoba Junior Hockey League's Neepawa Natives this fall.
When asked what is the hardest part about living with arthritis, Russell doesn't hesitate.
"Watching my mom cry when she hears I'm having more surgeries," he said.
His 11th surgery will be mid-July when he'll have an Ahmed valve implant to relieve pressure in his right eye.
Russell is the top fundraiser for Winnipeg's Walk to Fight Arthritis for a second straight year. He set a goal of $5,000 this year and is close to reaching it.