The Fortes - Taking Usher 1F Collaborative to Canada for Diego
by Nicolas and Marisa Forte
Diego Forte, born on January 1st in Ottawa, Canada, burst into our lives giving us a glimpse of his personality; full of surprises but strong and determined. Little did we know he was gently preparing us for the future.
Shortly after his birth, we learned of his hearing loss. Of course, this was followed by multiple specialist appointments that led us to his diagnosis of Usher Syndrome type 1F. We were left shocked and devastated; not only was our son profoundly deaf, he also had poor balance and will have vision loss starting in childhood. We did not know where to start, but we knew we had to become his advocates.
We began attending speech and physical therapy during his infancy, followed by cochlear implant surgery. Today, he is an expert in verbal communication and a happy and very busy four-year-old with many interests.
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.
We connected with the Usher 1F Collaborative during our quest to find a solution for our son. We were very fortunate to find Usher 1F Collaborative and the teams and people involved in finding a cure. We understood the disease, yet we craved to have expert knowledge and understanding. As we became acquainted with the Collaborative, we learned that 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. Just like that, 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 my son's eye condition to come, we knew we had nothing to lose, we began fundraising from Canada. There is power in numbers and the goal is to reach as many people as possible to help get that cure!
That is why we are honored to announce that Usher 1F Collaborative will be extending into Canada! Because of our affected families and donors in Canada, we have incorporated here and are just awaiting our charitable status to fully launch!
We were so glad to find Usher 1F Collaborative. Knowing there are others with this very rare disease is helpful, and knowing there are teams working on finding a cure is hopeful! Although Usher 1F Collaborative is an American organization, the teams involved are global. Finding a cure would not only help everyone with Usher 1F, but would also help everyone in the quest to find a cure for all forms of vision loss!