COLUMBUS, Ohio — Landon McChesney has become a bit of a local celebrity, his parents say. And that may be even more true after Saturday’s Ohio State game against Notre Dame.
The 6-year-old has gained a lot of popularity around Central Ohio and beyond in the past year or so as his battle with a rare condition has become more well known. Landon has 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.
Because his disorder is so rare, his parents turned to a private company for help. But that help came with an initial price tag of $50,000. His parents met that goal, thanks in part to an appearance on national television during last season’s OSU-Michigan game in Ann Arbor.
That funding allowed the McChesneys to work with the company Rarebase, where scientists used blood samples from Landon and his father to create neurons on which to test already approved drugs they believe could be effective in treating Landon.
Recently the McChesneys got good news about that research.
“It’s amazing,” dad Mike McChesney said. “I mean, it feels like we’re landing on the moon the fact that they found viable therapies that can be applied to Landon.”
In fact, they say the scientists at Rarebase found eight viable treatments. So the next step is to actually test those treatments on Landon to see what kind of effect they can have.
“The thought of him being able to speak, to walk, to talk is beyond our wildest dreams,” mom Jaren McChesney said.
But this next phase requires more funding - $75,000. The McChesneys decided to do a repeat of what worked before and went back on national television this past weekend. Mike McChesney and a friend help up signs reading “Bucks for a Cure” with Landon’s picture, while Jaren McChesney and a friend held up Landon in his wheelchair.
The efforts seemed to work, with the family managing to raise nearly $20,000.
Now the race is on to get the rest. The family plans to sign the new contract with Rarebase in the next two weeks or so. Then the couple will have a month to raise the rest of the funds.