CORONADO, Calif. (KGTV) — A rare genetic disease left a Coronado teenager legally blind at 13. Now he's running track — and helping drive research for a cure.
Xavier Marsh was 13 years old when his vision began to deteriorate rapidly. Within two months, he went from perfect 20/20 vision to 20/800 — legally blind — after being diagnosed with Leber Hereditary Optic Neuropathy, or LHON, a genetic mutation passed down from his mother that can result in sudden, severe vision loss in both eyes.
LHON is one of the rarest diseases in the United States, with only about 100 new cases diagnosed each year. There is no cure.
Xavier said the diagnosis came quickly and without warning.
"They said glasses are just not going to cut it, and so we learned that something bigger is going to go on," Xavier said.
His father, Chris Marsh, recalled the moment his son made clear how he intended to face his new reality.
"He turns to me, and he says, 'I'm going to figure how to live with this thing. You and mom, go figure out how you can help fix this,'" Chris Marsh recalled.
While his parents searched for answers, Xavier found his own way forward — on the track.
"Although I started because I lost my vision, I continued because I actually truly loved it and I found a passion with it," Xavier said.
Xavier still has his peripheral vision, but his central vision is gone. On the track, that means he cannot see what is directly in front of him.
"So I just have to kind of soak into my own brain and find my own way to get to get to that finish line," Xavier said.
The Coronado High School junior races against sighted peers. His track and field coach, Cameron Gary, said Xavier's condition is nearly undetectable during competition.
"Basically, he's just like everybody else, frankly. It's almost invisible, to be honest with you," Gary said.
Beyond the track, the Marsh family has connected with the Milken Institute, a nonprofit focused on improving outcomes for patients living with rare diseases. The organization helps guide families toward research investments most likely to make a difference.
Caitlyn Barrett, a director at the Milken Institute in Strategic Philanthropy, said the goal is to empower families to drive change.
"We are giving them the confidence, the tools to ultimately go out and say, 'Hey, if your goal is also to cure Leber Hereditary Optic Neuropathy, these are the things that we've learned would be really beneficial. This is how you move the needle, and we'd love for you to partner with us. We'd love for you to think about how we can come together and fund research and make a real difference within this space.'"
For Xavier, the road ahead remains unclear — there is one thing he can see perfectly.
"That was the beginning of the story, but it's certainly not the end," Xavier said.
Xavier's first track meet of the season is on Saturday, Feb 28 which also just so happens to be Rare Disease Day.
It's the next step on Xavier's journey toward something bigger, with dreams of one day competing in the Paralympics.
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