"Volley for a Cure" continues mission to support Ohio boy with rare genetic disorder

COLUMBUS, Ohio (WCMH) -- The family of a young Upper Arlington boy with TBCD held their third annual 'Volley for a Cure' at Woodland's Backyard. The charity tournament was centered around raising awareness and funds for genetic research and treatment.

"Landon really is just a magnet for all good," Landon's mother Jaren McChesney said. "No matter what is thrown at him, he's happy. He's what we look to keep going every day. He's our motivator."

NBC4 first introduced you to Landon McChesney in 2021. At the age of two, he was diagnosed with TBCD, a rare genetic disorder that's left him unable to talk or walk. 

"Life is about the next person helping the next person and we saw Landon and I just told my guys that's somebody that's just genuinely dealing with something so severe, like it's a blessing for us just to wake up each and every day and be able to do the thing that we love," Ohio State basketball player Bruce Thornton said. 

Landon was originally given just two years to live but he's defying all odds after recently celebrating his ninth birthday. 

"At the time he was the only one living in the United States or in the world with this condition," Jaren McChesney said. "Now they've identified fifty living patients around the world."

Saturday was about more than serves, sets and spikes. It was a true testament to the village Landon, and other children battling rare genetic disorders, have behind them.

"He's always an uplifting spirit so that gives me a reason to play and it gives me a reason why," Ohio State women's basketball player Kennedy Cambridge said.

Landon's special bond with the Ohio State athletic community shined through as they joined the community to 'volley for a cure'.

"It just gives us a chance to know that we can't go on the court and take advantage of what we were blessed to be able to do every day, so it's just a blessing in disguise and to have him there to support us every day it's bigger than what we realize," Ohio State women's basketball player Chance Gray, said. 

A sign that went viral at an Ohio State-Michigan game sparked it all. 

"I reached out to every colleague. Everybody that I know across the medical community, and just was really rudderless until my husband took the sign up to [ESPN's College] Gameday. Just a plea to help. And it sparked this whole movement for Ohio State to rally around Landon," Jaren McChesney said.

Ohio State football player Bryson Rodgers said Landon is an inspiration to him and his team. 

"Kind of like our culture with the football team, the one word we use is fight. And I feel like he's been in a life fight his whole life. So he embraces that and as long as he keeps doing that and inspires others, he's going to keep doing great things," Rodgers said. 

Landon's family started 'LandOn a Cure' shortly after his diagnosis.

"Unfortunately, with such a rare disorder, there's no funding, there's nothing," Jaren McChesney said. "You leave with a diagnosis that's pretty grim and you're left to your own devices as far as how to navigate the disorder."

Now Landon's family gets calls from patients across the world who are newly diagnosed with TBCD, including the Davis family whose two young children have it. 

"I'm already thinking about how to do something similar in Nashville, because the more support the better," Amanda Davis said. 

The Davis' made the trek from Tennessee to meet the McChesney's after hearing about Landon's story.

"Its been really refreshing, really comforting to find other people, other families, like us," Zach Davis said. 

All proceeds from Saturday's event at Woodland's Backyard will go to the Ohio State and Nationwide Children's teams studying Landon's disorder.

"We are moving at lightning speed and we kind of understand the disease as we're building the treatment, so kind of like building the plane as we fly in," Jaren McChesney said. "But we are lightyears ahead of where anyone would be in just a few short years."

Jaren said since starting 'LandOn a Cure' they've been able to fly in over 20 people with TBCD to Ohio State to get samples in preparation for a clinical trial. She said gene therapy would be lifechanging for these kids, but it all starts with awareness and sharing their stories.