COLUMBUS, Ohio — For every parent, time is precious. But that is especially true when it comes to time with Landon McChesney.
“He is an absolute bright light,” Michael McChesney said of his son. “He’s very fun. He’s engaging. He lives in the moment. He loves to be silly.”
But the 5-year-old is facing a ticking clock. He was diagnosed with a TBCD gene mutation, an ultra rare genetic disorder. He can’t walk or talk and is considered to have a global delay, meaning the disorder affects every aspect of his development.
“When we first got the call that day, they said that he probably wouldn’t make it to the age of 4, so that was a hard, hard day, and, since then, we’ve just truly launched a mission to find information,” said mom Jaren McChesney.
But that mission was tougher than expected. His parents say Landon is one of only 12 people worldwide to have this disorder. That means information, research and treatment is hard to find. Eventually, the family connected with a mother in the UK on her own mission to help her son. And from there, the McChesneys found Rarebase.
The company is a public benefit biotech that would use blood and tissue samples to create synthetic neurons to treat Landon.
The McChesneys eagerly signed a contract. But that contract comes with a Dec. 31 deadline to raise $50,000.
“That’s when we looked at each other and were like, what are we going to do,” Michael McChesney said.
What they did was come up with a grand plan to grab the attention of football fans. Michael McChesney and his brother drove to Ann Arbor this past weekend to get a huge sign for Landon on national television.
“I didn’t know if it was working,” Michael McChesney said. “I had no cell service, I had no feedback. And these nice college kids kept saying, now you’re on TV, now you’re on TV. So I just did that for as long as I could, almost two and a half hours, and it worked.”
During that time period, more than $20,000 poured into the Venmo account set up for Landon. That got the McChesneys just past the halfway mark toward their goal.
“It’s tough not to get emotional about it because you don’t expect anything, and people that we don’t know extend themselves to help something that they don’t really know that much about, but they’re good people, and they care, and it’s remarkable,” Michael McChesney said. “It’s really remarkable.”
The McChesneys are incredibly hopeful now that they will reach their goal. But they still have thousands of dollars to raise before the end of the year.
“We just feel really lucky to be in this position, and all we can do is hope that we hit our goal and that this research actually works and we can find a solution, some answers, to help him,” Jaren McChesney said.
For more information about Landon and how to help, click here.