Hanna Love says she and her husband are focused on giving their young kids as many memories as possible before they go blind and possibly completely deaf.
You would not be able to tell it now, watching the seven- and five-year-old brothers zoom around a motocross track on their dirt bikes, but the two have a rare genetic condition that causes progressive hearing loss and blindness.
The brothers from Simcoe County in Ontario have Type 2 Usher syndrome, meaning they were born with moderate hearing loss, which could get worse over time, and will start to lose their sight and become blind.
“It was definitely overwhelming at first. There was a big grieving process, kind of just trying to wrap our heads around what we were dealing with. Neither one of us had a hearing loss in our families or vision loss in our families, so it’s a big learning process for us as well,” Hanna said.
According to Fighting Blindness Canada, Usher syndrome is a genetic disorder characterized by the loss of both hearing and vision affecting somewhere between four to 17 out of every 100,000 individuals.
The organization says on its website that the syndrome results from a combination of retinitis pigmentosa, which leads to gradual vision loss, and abnormalities in the inner ear, which lead to hearing loss.
“We were lucky in the sense that they were diagnosed so young. So we do sort of know what to expect; we just don’t know what time. But we do have a better understanding of what our boys’ futures look like. ”
Both her sons, Kolton, 7, and Karson, 5, wear hearing aids, but Hanna says that if their hearing gets worse over time, they will require a cochlear implant.
She says that because her boys are young, it can be hard for them to grasp what will happen as they age.
“What we’ve decided as parents is to raise them as just average children. They are still very young, and they don’t understand the full extent of their diagnosis,” Hanna said.
Usher syndrome has no cure, but the family is trying to give them as many experiences to remember now before the change happens.
“Let them kind of live life to the fullest now in order to create core memories that they’ll have to look back on when their vision starts to go,” she said. “Whether that’s trips, experiences, sports or just different activities to do, so they get the feeling of what it was like to do that if in the future there’s ever a time they can’t.”
The two both do competitive motorsports racing, competing in motocross races all over Ontario and snocross racing on snowmobiles in the winter.
“We figure it’s a good way for them to experience being in control of vehicles and kind of get the need for speed while they can if there’s ever a time that they’re not able to drive, at least growing up they were able to have the experience of controlling their own vehicle.”
The boys were just at an event this past weekend where they placed first in several events.
When asked about eventually having to give up racing, Hanna admitted it was a difficult topic.
“That’s tough for sure to think about, especially with how well they’re excelling in these sports. I try not to think about it a bit,” she said.
She says if the time does come, she knows that there are other sports and her sons will find another passion, but she is hopeful that awareness can lead to a treatment or cure.
To help raise awareness, Hanna and her husband started the Usher Syndrome Warriors Foundation in 2022. Through the foundation, she says they have been able to spread awareness and raise funds for Fighting Blindness Canada to research retinitis pigmentosa.
“I’m pretty optimistic and hopefully thinking that there will be a cure out there sometime. I feel like in their lifetime, there might be, and when I think that way, I go, well, maybe there won’t have to be that tough conversation. Maybe they will still get to do this well until they’re older.”