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Rival baseball teams come together for 6-year-old with rare genetic disorder

Holly Viers • Jul 16, 2017 at 12:00 PM

KINGSPORT — Last Saturday’s USSSA World Series game between the Tribe and the Rebels was in its final moments when 6-year-old Jaxon Clendenin stepped up to the plate.

Dressed in a maroon Tribe jersey, Jaxon picked up his bat and prepared for the pitch. He swung and watched excitedly as the ball soared across the field. He had hit a home run.

Though many children have experienced the joy of hitting a home run, this moment was particularly special for Jaxon, who lives with a rare genetic disorder known as ECHS1 deficiency.

D’Anna Clendenin, Jaxon’s mother, said her son was diagnosed in 2015. Though two or three other children in the U.S. have been diagnosed with ECHS1 deficiency, Clendenin said her son was the first documented case in the country, and he remains the only one in the U.S. with his particular form of the malady.

With this condition, Clendenin said, Jaxon experiences a variety of episodic symptoms including losing his ability to walk, speak clearly and move from the neck down. She added that there are no treatments or cures for ECHS1 deficiency, and the disorder is life-threatening.

“The only thing we can do is try to treat the symptoms,” Clendenin said. “Jaxon has probably tried 13 to 14 different kinds of medications that are out there, including some that have not even been FDA approved, to try to treat the symptoms, with no success.”

Cory Martin, coach of the Tribe 9U traveling baseball team, has been a family friend of the Clendenins for many years. While hosting a Fourth of July cookout for the Clendenins and other families, Martin noticed that Jaxon showed an interest in sports, which gave Martin an idea.

“In my mind, I’m thinking this kid may never get the opportunity to even be on a competitive team,” Martin said. “I called Richard Frazier, who is the coach for a team that we were going to play on Saturday (at the World Series). He said he would love to be a part of a special moment for a special little boy.”

Frazier, the coach of the Rebels, and Martin agreed that at the end of their game, no matter which team was winning, they would give Jaxon the opportunity to play.

“It was an honor for us to be able to do that for him and the family and give something back to both of our communities,” Frazier said. “It was just an overall special moment for everybody, and the people involved made it that much more special.”

Jaxon spent the day at Domtar Park with the Tribe players, participating in the opening ceremonies and parade. After the game, Martin said Jaxon was awarded his home run ball, an MVP T-shirt and a ball signed by the Kingsport Mets.

David Clendenin, Jaxon’s father, said his son hasn’t stopped talking about his home run hit.

“Everybody was cheering for him,” Clendenin said. “It meant a lot to him.”

To Martin, Jaxon’s homer was the most special part of the World Series, and it is something he will never forget.

“No matter what color your uniform is, we all came together as one big family to love on this kid and provide an opportunity for this kid to experience a home run. Life’s about showing love, and I feel like our community really came together to do that.”

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