An Orillia family living with the daily impacts of Type 2 Usher syndrome, has turned the challenge into a cause.
Hanna Love and her husband, Kyle, founded the Usher Syndrome Warriors Foundation in January 2022 to help families with children diagnosed with the rare genetic disorder that has caused their sons — Kolton, 5, and his brother, Karson, 3 — to lose their hearing. It will eventually claim their vision as well.
The foundation, in honour of the two boys, recently donated $40,000 to Fighting Blindness Canada.
Until Karson was born, the family wasn't aware there was a genetic issue with their two sons caused by a gene mutation in both Love and her husband.
"Once they were both diagnosed with hearing loss, we realized it was something genetic," Love said. "We did further tests but didn't fully get the diagnosis back until Kolton was three."
Kolton and Karson both have to wear hearing aids at all waking hours of the day to hear at an average level. It helps assist them with day-to-day living. Eventually, their eyesight and hearing will entirely deteriorate.
"This is why we started the foundation," Love explained. "We want to be able to donate funds directly to research for Usher Syndrome and Retinitis Pigmentosa, the eye disease that comes with it."
With the help of their funds, the Loves hope that healthcare providers will be better educated about the syndrome and will come up with treatments to prevent or slow down the disease.
"We hope that one day, they will find a cure," Love said.
The recent $40,000 donation was raised through slo-pitch tournaments, golf tournaments, and other fundraisers — all organized by the Love family.
"It's overwhelming," Love said. "We are so grateful, honoured, and blessed" by the support.
Before hosting the fundraisers, Love wasn't sure she and her family could be the face of a charity.
"We realized that the most important people to be doing this are the ones living it every day," she said. "The community just keeps growing and there is always a huge support system for our charity."
As important as it is to raise money, Love, 33, says it's just as important to raise awareness.
"Usher Syndrome is such a rare disease that we didn't even know about," Love said. "Almost everybody that we have come into contact with hasn't heard of it either."
Raising $40,000 over the past two years is just the beginning, Love says.
"We still have a lot to learn when it comes to running a charity," she said. "Each year, we are going to gain knowledge and experience, and just keep going."
The Love family is not living in sadness despite knowing their two children will lose their hearing and vision some day.
"We believe it could be easy for us to be really sad and depressed about this happening to our sons," she said. "We think it's important to be more optimistic and show our children they can do anything they put their minds to."
Both Kolton and Karson race snowmobiles and dirt bikes; they also play hockey. They have been raised no differently than other children, their mom says.
"In our day in age and technology moving at such a fast rate, we hope that there will be a cure or things that will help slow down the deterioration process," Love said. "We want them to have as normal of a life as they can have with their disabilities."
The Loves are working hard to get their fundraisers planned for 2024. To follow them along on their journey, or to donate, click here.
