Corkery’s Diego heart of Usher Syndrome Catch the Ace fundraiser

CORKERY – Corkery’s Diego Forte, 6, is a typical busy boy who loves art and the outdoors. He was diagnosed with a rare genetic disease at six-months-old.

His parents Nic and Marisa say he is full of surprises but strong and resilient above all. 

Shortly after his birth, Nic and Marisa learned of his hearing loss. This was followed by multiple specialist appointments that led to his diagnosis of Usher Syndrome Type 1F. They were left shocked and devastated; not only was their son profoundly deaf, but he also had poor balance and will have vision loss starting in childhood. They did not know where to start, but knew they had to become his advocates. 

“Diego began attending speech and physical therapy during his infancy, followed by cochlear implant surgery,” Nic told West Carleton Online. “Today, he is an expert in verbal communication who enjoys school, rock climbing and gymnastics. Attending appointments and helping him through the challenges of hearing loss and poor balance gave us some peace as he made improvements daily. We fear the hardest challenge is yet to come as he begins to lose his vision, first with night blindness, followed by peripheral vision loss which will result in complete blindness by adulthood.”

Nic and Marisa connected with the Usher 1F Collaborative during their quest to find a solution for Diego.

“We were very fortunate to find Usher 1F Collaborative and the teams and people involved in finding a cure,” Marisa said. “We understood the disease, yet we craved to have expert knowledge and understanding. As we became acquainted with the collaborative, we learned there are so many out there affected by Usher 1F. We were able to connect with a large network of experts that graciously took time to talk and explain things to us. A little more peace of mind was added to our lives knowing there are experts across the globe working hard to crack the code and find the cure.” 

Rather than sitting back and accepting the fate of Diego’s eye condition to come, the Fortes began fundraising and ultimately founded the charity, Usher 1F Collaborative Canada. The Canadian charity works in tandem with the collaborative in the United States to fund research for a cure for the vision loss associated with Usher 1F.  

This winter, Usher 1F Collaborative Canada is excited to be a beneficiary of the Kin Club of Russell’s Catch the Ace lottery, which could raise thousands of dollars.

“This would help the collaborative advance their investments in research labs,” Nic said. “Any person 18 years of age or older, physically in the province of Ontario can purchase a lottery ticket – with a chance to win the jackpot and join the efforts for a life changing cure for Diego and others at the same time.”

To learn more about Usher 1F, click  Usher 1F Collaborative Canada : USHER 1F CANADA : Usher 1F Collaborative.

To purchase Catch the Ace lottery tickets visit Catch the Ace | Kin Club of Russell.