At 12 years old, Landon Johnson has reached the age where eye-rolling is a common response to his parents.
But Andrew and Bethany Johnson take it in stride. The Seymour couple are just thankful their son is here today and able to respond at all.
Landon lives with spinal muscular atrophy (SMA), a genetic neuromuscular disease affecting his central nervous system, peripheral nervous system and voluntary muscle movement.
“It affects the way his brain talks to his muscles,” Bethany said. “The gene that does that communication is deleted, so he cannot move his body.”
He is unable to speak or walk and uses a feeding tube to eat and a tracheostomy tube and ventilator to breathe. He relies on his family and a home health nurse for all of his needs.
Although SMA greatly impacts the body, it does not affect Landon’s mind.
“His brain is fully functioning like a normal 12-year-old,” Bethany said.
As a seventh-grader at Sandy Creek Christian Academy in Seymour, he excels at math and science.
“He’s incredibly good at math. He can do math in his head that I couldn’t do with pen and paper and a calculator,” she said. “So he enjoys math and he likes science. He does not love English or language arts.”
Landon is able to answer questions by saying “uh-huh” or blinking once for yes or scowling for no, Bethany said.
“Or an eye roll,” she said. “There’s lots of eye-rolling going on here in our house. You can definitely tell he’s coming into his teenage years.”
Doctors diagnosed Landon with SMA when he was 6 months old and only gave him a couple of years to live at best.
“It was about his four-month appointment, he wasn’t meeting milestones, and we began testing,” Bethany said. “It was at six months when they finally did the correct test.”
Being hereditary, SMA is passed down from Andrew and Bethany. Both are recessive carriers, giving them a 25% chance of having a child with the disease. But neither had even heard of the condition before Landon was diagnosed.
“There’s no family history of it that we are aware of,” Bethany said.
Landon continues to defy the odds, however, and with advancements in treatment has even shown some improvement.
“When he was diagnosed, there were no treatments and no cure. There was nothing. We were given a very grim look at the future. It was a very dark time,” Bethany said.
“We were told to take him and love him until he passed away,” Andrew said.
In December 2016, a treatment for SMA was approved by the Food and Drug Administration. Landon started the treatment, which is a lumbar puncture, in 2017 and has been getting it ever since.
“He gets those every four months,” Bethany said. “And he will get it for the rest of his life.”
Although he was older than most of the children who started the treatment, he has responded favorably to it.
“In the grand scheme of things, they are small improvements, but he has gained some movement back in his left leg, and what little movement he had in his right leg, he’s stronger with,” she said.
He also has had some increased facial movement.
“That’s a huge deal because he had completely lost the ability to smile, and he has gained that back a little,” she said. “We’ll take whatever we can get.”
Bethany also said she sees increased respiratory strength.
“He was fully dependent on a BiPAP. We could not take him off it for any time at all,” she said. “But we have seen decreased reliance on that. He still has to have it, but now, we can walk him to the bathroom without the ventilator, and we put it on him when we get in there.”
SMA is a progressive disease, meaning it will continue and get worse. But the treatment has stopped the progression.
“Even if he doesn’t gain anything, we don’t know how much it stopped from getting worse,” Bethany said.
Recently, SMA treatment was approved, and the Johnsons hope to be able to switch Landon to it soon because it’s an oral medication that can be administered at home through his feeding tube once a week.
“It would be a lot easier on everybody,” Bethany said. “We do all of our care in Cincinnati, so we wouldn’t have to travel for his treatments.”
At home, Landon’s younger siblings, 5-year-old Braylen and 3-year-old Reed, love to interact with him.
“They are hilarious,” Bethany said.
Braylen is especially close to Landon.
“She adores her brother,” Bethany said. “They’ve had a really close bond ever since she was born.”
Even at such a young age, Braylen is very involved with Landon’s care. She knows what all of his machines are called and can feed him and suction saliva out of his mouth so he doesn’t aspirate, Bethany said.
“She just loves to be with him,” Bethany said. “They sit and play games together and watch movies.”
Being a good big brother, Landon even tolerates playing Candy Land with Braylen, Bethany said.
But he really enjoys playing video games with his dad and his best friend and just recently joined his church’s youth group.
Between school, youth group and church, he gets quite a lot of social time, Bethany said.
Early on in Landon’s life, there were so many challenges the family faced with learning about all of his medical needs, but over the years, those needs have changed to making sure their son is stimulated mentally.
“Now, more of our issues revolve around figuring out how to challenge him in school and making sure we are communicating his answers and not what we are coming up with,” Bethany said.
Landon attends school four days a week. He is in a regular classroom setting with other students, and he also has a teacher’s aide who works one-on-one with him and transcribes his answers for him.
He can use an eye gaze computer that allows him to use eye movement to communicate. Instead of using it for school, however, Landon prefers to play games on it, Bethany said.
“We’re trying to force him to use it appropriately, but it’s hard to force him to do anything,” she said. “Our goal is that he uses his eye gaze appropriately at least one subject a day in school.”
But she understands that using the device can be overwhelming, both physically and mentally, for Landon.
“It’s very hard. Physically it’s exhausting, and it’s frustrating because sometimes, it won’t pick up what his eyes are looking at and will click on something else,” she said.
But he is doing better with it this year, she added.
At the end of October, the Johnsons pull Landon out of school and homeschool him until spring break to better protect him from getting the flu. With the current COVID-19 pandemic, they have just extended that protocol by taking him out less.
Another challenge they face in taking care of Landon is that as he grows, it becomes physically more demanding on Bethany and Andrew and his nurse to bathe him and move him.
The family currently is saving money to remodel their bathroom. Although they have a lift, their house is not really compatible for them to use it.
“So what we are doing now is one of us carries him and lowers him into a bath chair that is in the regular bathtub, and then when he’s done, we pick him back up and take him back to his room,” Bethany said.
But at 70 pounds, it’s becoming more dangerous to move him on their own.
Another item they will need in the future is a new handicapped-accessible van.
“Those are our two big things we are saving for right now,” Bethany said. “Insurance covers a lot of our medical, but these are things that just make life easier or give him a better quality of life.”
That’s where Jenna Martinez of Brownstown decided to step up to help. She used to work with Andrew at Samtech in Scottsburg.
Now, Martinez owns The Magic of Books bookstore in downtown Seymour and runs The Boozy Bookworms book club. She is using those outlets to raise money for the Johnson family.
On Saturday, the book club will be conducting a Halloween-themed bake sale outside the store at 113 W. Second St. from 9 a.m. to noon. The book club, in partnership with the bookstore, also is conducting a raffle drawing on the same day for an Ashmore 24-inch outdoor fire pit filled with more than 30 donated items and gift certificates.
Tickets are $2 each, three for $5, seven for $10 or 15 for $20. They can be purchased from any book club member or at the bookstore.
The Johnsons say they are amazed by the show of support for Landon from the community.
“It’s just amazing to see the support we’ve gotten for the past 12 years,” Bethany said. “It’s so incredibly humbling to see people come together wanting to help him and wanting to help our family. We feel really blessed.”