In the Spring of 2025, we were given some very unexpected and upsetting news. But following that news we were also given something very unexpected…..hope.

After what was thought to be a routine eye exam appointment, which turned into multiple trips to NYC for testing and finally to Children’s Hospital of Philadelphia, Sean was diagnosed with a very rare inherited retinal disease called RDH12 Leber Congenital Amaurosis (LCA). People with RDH12 LCA experience night blindness, restriction of visual field and progression to blindness generally by their late teens/early twenties. No child experiences the same RDH12 disease progression.

This news absolutely shattered our world as you can imagine. But with a lot of research and a lot of prayers we found hope. The RDH12 Alliance is an amazing group of individuals and families affected by RDH12 gene mutations. They have been working tirelessly to find a cure for this vision robbing condition. In July 2025 the RDH12 Global Alliance partnered with Opus Genetics, a clinical-stage ophthalmic biopharmaceutical company, to accelerate development of OPGX-RDH12, a gene therapy for RHD12-associated Leber congenital amaurosis. We feel very fortunate that Sean currently has good "functional vision". He is a happy, silly, hilarious, kind, fun and special little guy living a great life!

Getting a new gene therapy into and through clinical trials and ultimately to the patients who need it, is an extremely lengthy and expensive process. We are humbled to join this crusade as we race against time to help Sean and many others see the world for longer.

Any donation possible to help fund the research and clinical trial for a potential treatment would be so greatly appreciated. Please share this page with anyone and everyone, friends, family, neighbors, businesses. Prayers are greatly appreciated also. Thank you from the bottom of our hearts.

-The Barry Family- Kevin, Erin, Liam, Cassidy and Sean

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