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2024 Turkey Trot
Thursday, November 28, 2024

In September 2021, Xavier was diagnosed with Leber Hereditary Optic Neuropathy (LHON). LHON is a mitochondrial disease and when someone becomes affected with this disease they experience sudden, painless loss of central vision. In the course of two months, at 13 years old, Xavier lost his central vision and went from 20/20 vision to 20/800 vision from this rare disease.

Instead of seeing his life as over, Xavier continued his full-vision life activities with the attitude that nothing is impossible – it may just need to be done differently. His current busy life includes pursuing Eagle Scout rank with his Coronado Boy Scouts troop, mountain biking, skiing (including black diamond runs!) and running both Cross Country and Track and Field for the Varsity teams at Coronado High School. He also works to excel academically while learning to do schoolwork differently with very little time for transition from fully sighted to visually impaired.

Xavier’s foundation of self-confidence, positivity and sense of humor are signature traits. He continues to touch individuals and communities around him with his belief in what is possible and his overall spirit.

Throughout this journey, Rady Children’s Hospital has been Xavier’s and his family’s partner and support. It is thanks to Rady’s Institute for Genomic Medicine that a diagnosis of a mitochondrial genetic disease of LHON was identified through whole genome sequencing. After diagnosis, Dr. Richard Haas provided support and guidance for the mitochondrial root cause of LHON and Dr. Jennifer Graves, Xavier’s neuro-ophthalmologist in Rady’s Division of Ophthalmology has provided ongoing evaluation, monitoring, and most importantly compassion, for a disease that does not, yet, have a cure.

Despite this rapid disease progression, Xavier continues to believe and share with others how if we work together anything is possible and we, together, can make the unimaginable happen. 

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