Hopes that cure is found so that those with muscular dystrophy are not looked at differently
On a Thursday afternoon, Kyle Monot was sitting at his dinner table holding a pencil over his workbook while he focused on finishing his homework.
Only days earlier, it was announced that the R.J. Vial fifth grader’s hard work paid off when his project on muscular dystrophy took home the first-place prize in the sociology category at the school’s social studies fair.
He maneuvered his electric wheelchair down a ramp into his living room and placed himself in front of the poster board presentation.
The 11-year-old Boutte resident was born with muscular dystrophy and has been confined to a wheelchair for most of his life.
He said he took on the project, which included information about the nine types of muscular dystrophy and his own personal story about living with the disease, to educate others. He is hopeful that a cure for the genetic disease will be found soon.
“My goal is really that one day I just hope doctors find a cure for each of the nine different types of muscular dystrophy so everybody is not looked at differently, but the same,” he said.
In addition, Monot wants to let people know the disease is not contagious and show others not be afraid of those who have it.
“I just want people to know that it’s not anything that is going to infect you, like when you get sick and sneeze on somebody and they get sick. It’s not like that,” he said.
Monot’s presentation includes photos taken throughout his life showing the numerous medical procedures he has undergone as part of his treatment.
“When I shared my presentation with the judges, I was nervous,” he said. “When I had to present my project it wasn’t so bad, it’s just that when they asked me questions I explained it the best way I could remember how to explain it.”
His mother, Loni Monot, said it has been quite a journey since Monot was first diagnosed.
“He was around 4 months old when I noticed something wasn’t right with him and I brought it up with the doctor when he went for his 6-month checkup,” she said. “That is when she realized it was floppy infant syndrome.”
Floppy infant syndrome was a telling sign that a more serious condition was at hand.
Although doctors suspected Monot had muscular dystrophy, it was not until after he had undergone a battery of tests that he was properly diagnosed.
His older brother, Lance, had a name for him.
“A human pin cushion,” Lance said.
After six months of testing, doctors were able to find the proper diagnosis.
“He went for testing, MRIs, blood work and a muscle biopsy, which is where they take a piece of muscle out the leg and send it off and can tell you what is going on,” Loni said.
That is when Monot and the rest of his family really began to deal with the fact that he had muscular dystrophy and everything that comes along with it.
Unfortunately, the condition has also resulted in a weak immune system for Monot and he has been hospitalized numerous times due to secondary illnesses.
“Children’s Hospital was my second home for the first few years of his life,” Loni said.
Loni said normal colds and flus could be life threatening to her son.
“The major thing with him is just watching him getting sick with any type of respiratory infections and stuff because that is like the No. 1 killer in his disease,” she said. “It’s a lot harder for him because it is way easier for infections and things to set in. He doesn’t have the strength to cough it up.”
As Monot relayed in his presentation, the type of muscular dystrophy he has is called Merosin-negative and is noted by the lack of a protein necessary to properly build muscle. This inability to make normal muscle tissue has led to several surgeries, which were all well documented with photos provided along with his sociology project.
Many of the surgeries have been to reinforce his skeletal structure, including operations to his ankles, hips and back.
“He’s been through a total of seven or eight surgeries. His more recent ones are back ones,” Loni said.
Monot’s back problems in recent years have become more noted as the curvature of his spine worsened from ten degrees to 55 degrees in a short period of time. To correct the problem, doctors implanted adjustable rods on either side of his spine to keep him in an upright position as he grows.
“When he is going through little growth spurts they’ll go in and lengthen them until he hits full growth. Then they’ll either leave those or put permanent rods. It’s like little pins in there that they just go in and pop it up to the next notch to grow with him,” Loni said.
Despite the daily battle with muscular dystrophy, Monot said he does not feel his life is that much different from that of his peers. He likes to play video games, draw and can fully use a computer.
“The only thing muscular dystrophy holds me back from is just sports,” he said.
R.J. Vial Principal Jackie Sperier said her staff includes Monot in physical activity as much as possible.
“He just wants to be treated like anybody else,” she said. “For example in PE, if they are playing some kind of ball activity to get him involved they may adjust the type of ball that is used in order to meet his needs.”
Sperier said Monot is an inspiration to many at the school.
“He’s definitely a smart kid, he really is. He just has some physical disabilities that hinder him from being able to do what kids would do, but we would modify it so that he can experience just as much as they do,” she said.
With the win at the social studies fair, Monot will take his presentation to the regional competition at Nicholls State University on Feb. 24. If he wins there, he will go on to a statewide competition.
In any case, Monot will continue to study and learn about muscular dystrophy with the goal of educating others, but also learning more about the disease himself.
“Actually when I go into 8th grade, I have to do a science project and I’m actually doing muscular dystrophy again,” he said. “My teacher today said we can do the same project over and over again until we graduate. We just have to add more.”
He indicated his next step may be to incorporate information on genetic codes and abnormalities responsible for the disease.
“That’s just more information that I don’t know yet,” he said.
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