LAFAYETTE, La. (KLFY) -- Hope 4 SOD was in Acadian Village Sunday night to spread awareness about the rare condition, septic optic dysplasia.
According to the organization, septic optic dysplasia is a rare condition that 1 in every 10,000 kids have in their lifetime. 14-year-old Lani Bertrand was diagnosed with SOD at a very young age. The condition is a congenital brain development disorder that can affect vision. Micah Bertrand, a member of Hope 4 SOD and Layne's father, says she also was diagnosed with autism.
"It deals with the vision, so her vision is not there or very limited," Bertrand said. "She's also non-verbal and also autistic, and so those two combinations together for us to get help for her has been very very hard, and it's rare to find help, which is why we have the nonprofit, so we're raised with more awareness towards helping her future."
Betrand says it has been tough finding medical assistance for Lani. However, he says now that he is involved with the organization, it has instilled a renewed sense of hope in him.
"We got a lot of no's in my time helping her out, 14 years," he said. "And the reason we've been challenging these no's, everything and deeper into what's out there for her, and we found the help, which is why now we have hope for Lani, which is why we have Hope for SOD because now we're reaching out to different avenues to actually get her help."
He says he is excited for the growth of the organization in the future.
"Our hope for 2025 is to hopefully get bigger and grow, see about other families in a community and beyond that as well too, our main goal is to get this thing so great to where we can get help for the families," Bertrand said.
For more information about the organization and its work, visit their Facebook page, Hope 4 S.O.D., contact Micah Bertrand at 985-817-0076 or email hope4sod@gmail.com.
