Orillia’s Hanna and Kyle Love are among many across the country marking Cortical Visual Impairment (CVI) Awareness Month in September.
In 2022, they started the Usher Syndrome Warriors Foundation, and in 2023, they donated $40,000 to Fighting Blindness Canada. This year, the goal is $50,000.
In a campaign to raise more awareness about CVI and other genetic eye diseases, Fighting Blindness Canada reached out to the Loves. Their contributions to Fighting Blindness directly relates to the goal they set for their own foundation: to find a cure for Usher syndrome.
“We wouldn’t have even started (the Usher Syndrome Warriors Foundation) if it weren’t for having genetic testing done … I wish everyone could get it,” said Hanna Love.
Both of their sons, Kolton and Karson, now seven and five, were diagnosed at young ages with hearing loss. However, the setback has yet to stop them from participating in any activities, including competitive sports.
The diagnoses encouraged the Loves to undergo genetic testing, which has allowed them to understand their circumstances more thoroughly and prepare for what to expect.
“Their eyesight hasn’t been affected yet, but that is the road that our boys will be going down at some point,” said Love.
Both Kolton and Karson are expected to need assistance for their vision loss, such as a walking stick or a dog guide.
Genetic testing is the only way to know more about the causes of inherited retinal disease (IRD), and the Loves advocate for it.
The Usher Syndrome Warriors Foundation has small roots, but the Loves are motivated to make big changes in research and awareness.
They travelled to Rochester, N.Y., this year to attend their first Usher syndrome conference.
“That was very eye opening, no pun intended, to see what their future holds,” said Love.
The experience was educational and it connected them with a community of people with similar experiences.
The two Love boys enjoy a number of activities, including competitive motocross and hockey. Despite any impairments, the Loves want to provide their boys with any experiences they’re interested in for as long as possible.
Love, although overwhelmed at times, understands the unique circumstance of both boys’ diagnoses resulted from genetic testing.
“We were told it was a fluke,” Love said of when Kolton was first diagnosed with hearing loss.
The Loves have since gone for more check-ups and have been given further attention to respond quickly and appropriately.
“We would see the effects of their vision loss with these tests before they would see it themselves … because they can see so in depth into their vision,” said Love.
The Loves, through the Usher Syndrome Warriors Foundation, have organized a number of fundraisers including golf and baseball tournaments. The funds will go directly to Fighting Blindness Canada, which Love regards as their “biggest ally when fighting retinitis pigmentosa, the eye disease directly related to Usher syndrome,” said Love.
For Love, it is important that money raised through the Usher Syndrome Warriors Foundation stays in Canada and goes directly to research related to Usher syndrome.
“It’s rewarding to see the research going on and the community banding together … We’re still very small, but we’ve been able to make some connections … with other families,” Love said, adding sharing referrals and resources has also been a big part of their foundation.
One resource she finds valuable is EyesOnGenes.ca.
Although challenging at first, Love said the growth of the community and the generosity of people involved with the Usher Syndrome Warriors Foundation have helped make it easier. She said they are approaching their goal of $50,000. However, calculations will be made in December regarding this year’s contribution to Fighting Blindness Canada.
Promoting genetic testing and awareness of IRD is important to the Loves moving forward.
“I feel like we’re ahead of the game now as opposed to waiting until it’s almost too late to find out what these treatments are,” said Love.
With all of the current research, Love said, “we’re pretty optimistic that within (Kolton’s and Karson’s) lifetime, there should be something that could be treatable.”
More information about the Usher Syndrome Warriors Foundation, including how to donate, can be found here.
