The Feifs Family (Jonathan, Stephanie, Charlotte and William) was very excited to move from Seattle to London in August 2021, an overseas adventure we had long wished for. That Fall, we noticed that William was exhibiting peculiar quirks in his eyesight. We visited an ophthalmologist in January who told us that he observed some spots on his retinas. Naïvely we asked him, “Does he just need to get some new glasses for this?”, to which he replied that William had a genetically induced retinal dystrophy condition that would cause him to steadily and irreversibly lose his eyesight. He encouraged us to get genetic testing to find the precise underlying cause.
This was devastating news for us, but we were determined that we would give William the tools to live a happy and independent lifestyle in a future that would just be different than the one we had once envisioned. He is a very happy and well-adjusted child, and we knew that he would grow into a confident visually impaired adult. We initiated genetic testing during a springtime visit to a juvenile retinologist at Duke, and we continued living our lives in London, collectively adapting to his declining visual acuity and largely forgetting about the test results we were awaiting.
In August 2022 we got a call from Duke and were heartbroken to learn that William’s declining eyesight was just the first stage of a rare terminal neurodegenerative condition called CLN3 Batten disease. We were told his vision loss (which rapidly progresses to full blindness) will be followed by mobility loss, cognition loss, dementia-like symptoms, and reduced quality of life and lifespan. We also learned that there is no cure for Batten disease, and that the true hope to defeat it lies in gene editing technologies, which are certainly still years away.
William’s symptoms progress unabated: he has lost nearly all his functional vision, and this summer he began to experience seizures. But he remains a happy and resilient child who is not wistful about the loss of his eyesight and the ability to do some of the things he used to enjoy. He loves his school, his dog, and playing with his friends like any other 8-year-old boy. He competes in multiple visually impaired soccer leagues and enjoys swimming and indoor climbing walls. We hope to participate in a Phase III clinical trial starting in London in early 2024 for a medicine with the potential to slow the progression of neurological decline, while we wait for the development of new drugs and breakthroughs with gene editing.
We have challenged ourselves to find ways to give William and other Batten children the greatest chance of long and happy lives. The Beyond Batten Disease Foundation (BBDF) represents the best hope to drive the research and development of new medical interventions to eventually eradicate this horrible disease. We are establishing the Iron Will fund through the BBDF to bring additional resources to this fight.
We welcome your ideas, prayers and contributions to help us win the battle against CLN3 Batten. Our family is focused on making every day count, and creating happy memories during our time in London and beyond that will last us for a lifetime, even as things continue to get tougher. We do believe that where there’s a Will, there is a way.
(For UK friends wishing to donate via wire transfer, please fill out this form to receive instructions.)
Beyond Batten Disease Foundation was founded in 2008 to eradicate juvenile Batten disease by raising awareness and funds for medical research. Beyond Batten’s strategy brings together other affected families to connect communities and resources to achieve the goal. Iron Will is partnering with BBDF to find a cure for juvenile Batten disease for William and hundreds of other children.