About 200 local slo-pitch players are in Kitchener Park today to support two Orillia boys who have Type 2 Usher syndrome.
The rare genetic disorder has caused Kolton Love, 5, and his brother, Karson, 3, to fully lose their hearing and it will eventually claim their vision as well.
Their parents, Kyle and Hanna Love, created the Usher Syndrome Warriors Foundation in January to help families with children diagnosed with the disease. Saturday’s event was the foundation’s first major fundraiser.
“When our first son was born with hearing loss, we were told it was just a fluke,” Hanna explained. “It wasn’t until we had our second son, who was also born with hearing loss, that they realized it was something genetic.”
She says one in 100,000 people suffer from Usher syndrome. Having two sons with the disorder has been a challenge.
“They can’t hear at all without their hearing aids, which can be quite challenging at times,” she said. “They are pretty resilient, and they adapt as much as they can.”
“Night blindness is already starting for them now,” Kyle added. “Their peripheral vision is starting to close off. It’s just a matter of time before they fully lose their vision.”
Kyle and Hanna try to focus on the positives.
“They are happy and healthy boys,” Hanna said. “We’ve just decided that instead of being negative about it, we need to spread awareness.”
They hope they can raise money through their charity to find a cure for Usher syndrome.
“We want to help other people who have this condition,” Hanna said. “The support we’ve received from the community is amazing and I’m blown away by how many people want to help.”
There were 12 teams participating in Saturday’s tournament.
“Slo-pitch is something we’ve always done as a couple since we moved up here 10 years ago,” Hanna said. “It means a lot that everybody is here today. We didn’t realize how many people would be backing us and showing us support.”
While there is no fundraising goal, Hanna hopes there will be enough to make an impact for researchers. The funds will also go to helping families dealing with Usher syndrome who are less fortunate.
“The government doesn’t cover the hearing aids,” Hanna said, with Kyle noting they cost up to $5,000 per set.
The Loves travel to Barrie for moulds every three months, which costs $180 per child.
“It is definitely costly,” Hanna said. “We want to be a charity that can help families that may not be able to afford it.”
The next major fundraiser for the Usher Syndrome Warriors Foundation is a golf tournament at Lake St. George Golf Club on Sept. 16. To contact the Loves and reserve your spot, click here.
