Seth deBruyn's Story

‘Thanks to the CRF, we believe that a cure for cystinosis is near and that children like Seth will have a chance to soar to new heights in their freedom from disease.”


Seth was diagnosed with cystinosis on October 21st, 2013 at age one and a half. With this diagnosis, we would embark upon a new and unexpected path that was at first shrouded by darkness. In learning that our beloved son has such a rare and progressively devastating genetic disease, we were overcome with sadness and fear.

Time seems to have flown as we consider the years that have passed since ‘the fateful’ phone call from the Alberta Children’s Hospital, and yet, the journey has been long. We are grateful beyond measure that Seth is enjoying a happy, active and healthy life. At the same time, we can’t deny the impacts that cystinosis has on his life, with round-the-clock medication and their side effects, frequent specialist appointments and blood tests, severe photo-phobia all part of our ‘new normal’ daily experience. As parents, we must acknowledge the progressively debilitating nature of cystinosis and the far-reaching health complications that Seth will likely grapple with into his adolescence and adulthood.

And yet, we have hope. The Cystinosis Research Foundation in California allows us to embrace hope for the future through its rapid advancement toward better treatment and cure for Cystinosis. Thanks to abundant CRF-supported research and development, medical treatments for cystinosis have been enhanced over the years, allowing patients with cystinosis to enjoy a quality of life that had at one time seemed unattainable. With CRF-funded stem cell trials now well underway, we now have every reason to believe that the cure for cystinosis is on the horizon and that children like Seth will soon know a life that is free of disease and suffering. Thanks to the CRF, we have hope.

We are grateful for your support of the CRF, an organization that is a beacon of hope for so many. Your donation allows our light, our hope to shine brighter and there could be no greater gift.

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