Who is Jake?
Jake (short for Jaclyn) is a really cool 7-year-old in second grade. She loves Lady Gaga and Sabrina Carpenter, Calico Critters, doing handstands, and being a big sister.
She's also becoming more independent and confident in how she navigates the world with her vision. She's started using her white cane as a tool at school and in unfamiliar places, and recently used it to navigate all around New York City. She's learning to advocate for herself, talk about her vision, and ask for what she needs, empowered by an incredible support system at school and in our community.
Her condition
In 2023, our daughter Jake was diagnosed with Leber Congenital Amaurosis (LCA), a rare inherited retinal disease (IRD) that causes progressive vision loss. Today, Jake has less than 10 degrees of vision remaining in all directions, as well as night blindness. To get an idea of what that looks like, hold your arm straight out in front of you. The width of about 15 thumbs is roughly the window through which Jake sees the world.
Since her diagnosis, we've continued to learn as much as we can about Jake's vision and her specific form of LCA, caused by mutations in the NPHP5 gene. We recently had the opportunity to meet with experts in Jake's condition and were encouraged by what we learned about the vision she still has today. We're also encouraged by the progress being made in NPHP5 research and hopeful about what that research could mean for Jake's future.
Finding the Light
This October marks our fourth year hosting Finding the Light, a workout fundraiser benefiting the Foundation Fighting Blindness (FFB). The FFB funds critical research to discover preventions, treatments, and cures for inherited retinal diseases that affect more than 10 million people across the U.S.
Over the past three years, this community has helped us raise more than $25,000 through Finding the Light. This year, our goal is to raise another $12,500 to continue fueling research that gives families like ours hope for the future. Every contribution matters. Whether it's $10, $100, joining us for the workout, or simply sharing this page with friends and family, your support helps us push forward.
We are especially grateful to Lumos Fitness Collective for continuing to collaborate with us, support our family, and host this event year after year. Anyone is welcome to join us for the workout on October 31st (all skill levels welcome), or just come to hang out!
Thank you for continuing to be part of Jake's journey and for helping us find the light.
Where your donation goes
Every dollar goes to the Foundation Fighting Blindness, which drives the research, clinical trials, and treatments working toward a future where conditions like Jake's can be slowed, halted, or reversed. Donations are made through Jake's Foundation Fighting Blindness donation page.
Watch: Jake & Kym DeKeyrel
Jake with Kym DeKeyrel, who programmed the "Finding the Light" workout with CrossFit.
Help us find the light for Jake
Every $25 donated is one raffle ticket toward the prize of your choice, and every $100 earns 5.