Sam and Shani Urman reside in Toronto, Canada, with their five children. It’s hard not to smile when you speak with Shani Urman. She is a bright and cheerful woman who speaks joyfully about her children, no matter what challenges they may face. Four of the Urman children live with Usher 1F. Shani quickly reminded me that one can’t focus on everything at once and that the desire is for each child to be more independent, “Vision is so crucial to our whole being; it is so important to read faces and take in the world around you.” Vision is a key in the pursuit of independence. We discussed the work being done by our research teams and how integral that is. With the ability to place more resources in the hands of our researchers, we can continue this vital work, even through the Coronavirus!
Shani serves up realistic advice with a dash of optimism. “You don’t have to be as good as everybody, be as good as you need to be for you,” she says. This is a healthy reminder for anyone to internalize. And what was it that her family, her children, needed so they could “be as good as they needed to be” with these different constraints of COVID? The quick shift meant that there would be no more in-person classes. Shani found that instead of video, her children would resume classes over the phone. The transition was relatively seamless, as her children have received cochlear implants.
One thing that every parent worries about is the safety and security of their children. The Urmans are no different. There is a general fear of safety that is heightened for parents of a child living with Usher 1F. “You don’t know exactly how the vision will degrade, it’s a source of fear,” says Shani. As the children grow older, they desire independence and start venturing out in the dark. “When they are little, they’re with me. Now that they’re older… for safety, a vision breakthrough would be remarkable.”
For a moment, imagine a vision breakthrough. What would that even mean? “Right now, my children have residual vision, and are able to grasp. In terms of safety, a vision breakthrough would be a game changer. They wouldn’t bump into things; they wouldn’t trip over things. You want your children to be independent! It would be that one more piece that will help them be safe in this very fast-paced world.” Through the work done by Usher 1F Collaborative, our research strives toward this breakthrough on a continual basis. Through our network of researchers, families, and committed community members, we forge a common bond to reach our shared goal.
“We are all in the middle of our story,” Shani reminds me as our phone call draws toward an end, “We need this today; time is of the essence!”