Courtesy of Jaren Woodland-McChesney
Landon McChesney is one 21 people worldwide known to have the same TBCD disorder
Landon McChesney has a smile that’s larger than life. His sandy brown cowlick and chocolatey eyes frame a grin that loves to hang open with delight. Though he’s seemingly carefree, the 5-year-old suffers from a rare genetic disorder.
When Landon’s dad, Michael, held up a poster with Landon’s picture and the words “help my son” in the background of ESPN’s College GameDay broadcast before The Ohio State University Buckeyes faced the University of Michigan Wolverines, 600 some strangers rallied to support Landon with more than $20,000 in donations in mere hours.
His mom, Jaren Woodland-McChesney, compares him to the most popular kid in school.
“He just spreads joy wherever he goes,” she says. “There’s just something about him that you’re really drawn to.”
Landon’s condition is caused by a mutation of a tubulin folding cofactor D gene known as TBCD. He can’t stand on his own and has extremely limited speech abilities. Still, Landon’s receptive language skills far exceed expectations of him.
The initial prognosis for Landon wasn’t optimistic for improvements in his condition. With the support of his family and community though, Landon has proven to be capable of much more.
“We were given absolute worst-case scenario,” Woodland-McChesney says. “He’s breaking down those barriers.”
Finding Answers
Courtesy of Jaren Woodland-McChesney
An appearance in the background of a College GameDay broadcast led to more than $20,000 raised for Landon’s treatment.
It wasn’t until Landon was 9 months old that his condition began to come into view. He was diagnosed with an out-of-place hip, but even after surgery he wasn’t crawling or meeting milestones typical for his age.
Landon’s case continued to confound specialists.
“We got a lot of kind of closed doors in our face saying, ‘We don’t know what this is. He’s never going to walk, he’s never going to talk,’” Woodland-McChesney says.
For the family, that wasn’t good enough.
“At first it was a hard pill to swallow,” Woodland-McChesney says. “I felt like we were in this dark place. But my husband and I just kind of banded together and decided we weren’t going to accept defeat. In a way, it’s good to not fit into a box of diagnosis because then you’re limited.”
Eventually, Landon’s condition was traced to the TBCD mutation. Both of his parents carry the gene mutation, but its effects are recessive in isolation.
TBCD is believed to relate to protein coding that is partially responsible for brain and cell development, Woodland-McChesney says, which contributes to Landon’s global development delays.
With hard work by Landon and a supportive family, though, much progress has been made.
A robotic walking device, courtesy of Landon’s grandparents, allows him to practice walking while bearing weight in the correct posture, rather than hunching or dragging his feet. Using an assisted communication device similar to a tablet computer, Landon can string together sentences.
Even when he’s not actively working on progressing his abilities, Landon’s family is quick to support him however they can. Woodland-McChesney says her brothers, Jimmy and Jason Woodland, go out of their way for any request. When she proposed an idea for a Spider-man Halloween costume, Landon had an adaptive wheelchair decked out with lights and a spiderweb backdrop the next day.
Community support, whether from strangers watching football or staff and students at Wickliffe Progressive Elementary School, is just as important, she says.
Support in Numbers
The extreme rarity of Landon’s condition makes treatment even more challenging. The family has worked to raise awareness with the hope that it might also reach other families whose children have TBCD disorders.
In the few years since Landon’s diagnosis, the number of cases has increased significantly, but still only totals 20 worldwide.
“The more samples we have to compare with Landon’s the better,” Woodland-McChesney says. “We have strength in numbers.”
The family started a nonprofit, Landon a Cure, to help support research for Landon and other children with rare genetic disorders.
Connecting with others has allowed the family to share treatment options and ideas.
Even now, Landon’s case is being considered for an experimental treatment that would attempt to replace his gene mutation. The money raised through the College GameDay attention went toward the $50,000 cost of research with Rarebase, a public benefit biotech company.
The theory is that finding treatments for Landon can help others with TBCD as well as people with different genetic disorders.
“(The effort is) going to cutting edge medical research that could not only change Landon’s life but kids’ lives who have this disorder,” Woodland-McChesney says. “Hopefully we can apply this to other disorders.”
Whether due to new research, optimism or sheer force of will, Landon has continued to excel. Even small progress signifies to Woodland-McChesney that there’s potential for increased communication between Landon’s brain and body. Standing independently, a huge milestone for him, may be close.
That’s all cause for celebration, but Woodland-McChesney says Landon’s fifth birthday was a particularly big victory, as many children with TBCD don’t live that long. The birthday party included everything from a pony to a magician to celebrate Landon’s continued success.
“Now we’re just determined do to keep that going,” Woodland-McChesney says. “He’s beating the odds, quite frankly.”
Find more information about Landon’s cause at www.landonacure.org.
Courtesy of Jaren Woodland-McChesney
Landon and his sister Emory on Halloween 2021. An adaptive wheelchairmade a super costume for Landon.
Cameron Carr is the associate editor. Feedback welcome at ccarr@cityscenemediagroup.com.
