Landon continues physical therapy, but his diagnosis has changed. A neurologist diagnosed Landon with Leigh disease following an MRI.
Leigh disease is a severe neurological disorder that typically arises in the first year of life. This condition is characterized by progressive loss of mental and movement abilities and typically results in death within a couple of years, usually due to respiratory failure.
“It’s a genetic disorder and causes development and mental delays,” Burg said. “The chances of having a child with Leigh disease/syndrome is one in 40,000. I’m the carrier.”
Children with Leigh disease progress to a certain point and then begin to lose ground. Landon, 7, has hit his mark and is now going backwards, his mother said.
However, Landon saw the neurologist a couple of weeks ago and his motor and mental skills had not changed, Evans said.
“He’s already beat the odds for most of the kids,” she said.
He goes to occupational therapy at McLane Children’s Hospital Baylor Scott & White every Thursday where he works on his fine motor skills. The family travels to Temple from Lake Buchanan dam.
Occupational therapist Alicia Spence had Landon kneeling on a wooden platform attached to the ceiling with ropes and then throwing different shaped balls into a large inflated ring. This forced him to maintain his balance as the platform moved.
“It can also address sensory processing,” she said. “A lot of kids need that movement to help them calm down so they can better attend to the fine motor tasks.”
Landon then moved on to pulling small beads of different colors out of a blob of Silly Putty.
“This works on the pincer grasp and hand strength,” Spence said.
There were suppose to be 10 beads worked into the putty, but Landon became a little overzealous and dumped in well over 20 and for some reason the sticky nature of the putty began to bother him.
Spence helped him remove the extra putty off the beads.
The two then turned toward a white board where Landon drew lines with a pen and traced them with his fingers.
“We also use shaving cream and paint which gives them a lot of ways to practice doing the same thing over and over again,” Spence said. “We use all those sensory systems to work on skills.”
Spence decided to have Landon stand while he drew the lines.
“Sometimes we’ll incorporate two things like standing/balance and fine motor,” she said.
While at the board, Landon would call out to his mother to make sure she was paying attention to what he was doing.
Landon sees a specialist at Dell Children’s in Austin who only sees children with Leigh Syndrome.
“He’s still growing and they say that is good because in that he hasn’t plateaued,” Burg said.
Landon will eventually regress to a vegetable state and his will organs shut down.
Burg said she continues to process the inevitable outcome of her son’s life.
“We know what’s going to happen,” she said. “However, he could get sick and a virus ends his life in three days, or it could take 10 years.”
Landon doesn’t do sad, however he learned to mimic crying and whining from a stepbrother.
“He does have happy,” Evans said of her son.
Landon did go a little crazy when he saw Batman at the hospital a couple of weeks later and was thrilled to get up close to the superhero.
He’s in the first grade and is in regular classes that are supplemented with a life skills class.
Landon expresses himself on a three-year-old level, but comprehends at a higher level.
“He understands sarcasm,” his mother said.