When Joseph Louison, known to many as Joe, was little, he was always running. He would run to school, run in between classes to say hi to a teacher he was close with and barrel down sidewalks laughing amidst the disapproving looks of passers-by.

“Joe was always very quick,” senior Dan McLaughlin, Louison’s stepbrother, said. “There were times when we’d go out to dinner, and you’d think that you had him in your hands, but then as soon as you’d go to take a bite of food, he’d grab something off the plate of another person like that,” he said snapping his fingers. “So quick that you can’t do anything about it.”

Maura Callahan, Louison’s stepmother, said he would smile his crooked smile as he took food, so nobody would really have the heart to chastise him for it. But the family would sometimes run into trouble with victims of the theft.

“People would be like, ‘Oh my God, your kid just took a dinner roll off my table,’” Callahan said.

What those people did not know was that Louison had the rare degenerative genetic disorder Sanfilippo syndrome type A, or Mucopolysaccharidosis (MPS) IIIA. According to the website of the National MPS Society, people with Sanfilippo syndrome lack or produce an altered version of an enzyme that breaks down complex carbohydrates called mucopolysaccharides. Although people with Sanfilippo syndrome appear to develop normally at first, the build-up of these carbohydrates causes neurological impairment and the eventual loss of the ability to speak and walk.

Louison, who was part of Community Based Classrooms at the high school, passed away on April 12. He was 18.

Douglas Louison, Joe’s father, said despite the challenges of his disorder, Joe retained a warm spirit and radiated affection.

“Even when his disorder progressed and he lost much cognitive ability, he would know and recognize his loved ones by being expressive,” Douglas Louison said. “What gave us great comfort was that he was always happy; it was not the kind of disorder that troubled him or made him sad or physically uncomfortable.”

Callahan said Joe loved communicating and engaging with people. She said that although doctors were unsure of how much memory he had, she saw how he would recognize people from a long time ago.

“Say he had met you years ago; you would walk into the room and he would immediately start banging his hands, his leg,” Callahan said. “He’d want to reach out and touch you and grab you. He’d always give you a smile. He made great eye contact with people.”

Douglas Louison said Joe’s eyes alone could speak volumes. Dan Casey, Joe’s aide at the high school and later at home, described his laugh as cheerful and lighting up the room.

“He was just a loving, loving person,” Casey said. “Everyone loved him. He would just be smiling all the time, always wanting to do things. He always came to school with a smile on his face.”

Casey said Joe especially used touch to communicate. Douglas Louison and Callahan said his hands were always patting and caressing, sometimes creeping under Douglas Louison’s watch wristband and getting his fingers caught.

“If you pulled up to the school and you opened his door, he was slapping his hands or slapping my arm like, ‘Come on, let’s go, let’s go,’” Callahan said. “Or, he really did love food, so if you put out his favorite meal, he’d be grabbing your hand to help feed him faster. Things were likely to go flying.”

Joe loved ice cream, cheesy pasta and french fries; he used to constantly sing “The Remedy” by Jason Mraz; he adored Christmas movies and watched them year-round; he loved Spongebob and Cat in the Hat and Curious George and Shrek.

Douglas Louison said Joe always laughed at all the funny moments in the TV shows and movies he watched, even when he was not supposed to be able to process what he was watching.

Everything made Joe laugh, according to Casey. He laughed when someone walked into the classroom, when he saw one of his siblings in the hallways at school, when his younger sister sat on his lap and chatted to him while pushing his wheelchair.

“My nanna would always refer to Joe as a saint because he’s never done anything bad, he’s never tried to hurt anybody; he’s never insulted anybody,” McLaughlin said. “My nanna would always say that Joe was sent from God.”

McLaughlin said that he, Joe and their three siblings were all very close. He said he and Joe, being the closest in age, used to share a room and a bunk bed.

“I remember when we were really little, we were probably both in first or second grade, and we were in Florida on the beach,” McLaughlin said. “We were just lying around all day and running in and out of the water, just having a good time.”

Douglas Louison, Callahan and McLaughlin said Joe was especially close with his 9-year-old sister, Molly.

“Molly would take care of Joe during the day and she would feed him lunch and watch TV with him after school,” McLaughlin said. “When she had friends over, they would go in his room and hang out with him.”

Callahan said each stage of Joe’s disorder made the family work more like a team, always preparing for what was coming next.

“Everyone had to be thinking together and not going on their separate ways, because we couldn’t,” Callahan said.

McLaughlin said the family adjusted to each incremental change in Joe’s condition.

“I would have to be late to lacrosse a few times a week because I’d have to go carry Joe in and out of the house because he couldn’t walk,” McLaughlin said.

No matter what, the family made sure they always stuck together and included Joe in everything they did, whether it was sitting in his room and watching the Olympics with him, taking him to one of the boys’ hockey or lacrosse games, or bringing him on their boat to spend one last day enjoying the sun and the water.

“We always made sure that he was never warehoused away or isolated,” Douglas Louison said.

Despite the expectations of his doctors, Joe was able to walk until a year ago, managing by locking his hips or knees to prevent falling over due to his lack of muscular strength. Casey said that the slowing down of Joe’s body sometimes took its toll.

“It just got to a point where he knew he couldn’t do the things he once did,” Casey said. “I saw tears in his eyes sometimes. He always tried to help out when I put his shirt on, he’d always try to move his hand, and things like that. There was a lot of frustration in him, like he wanted to help, but he just couldn’t at times.”

But Joe fought on. On a beautiful day three weeks before he died, Callahan and Douglas Louison recalled that he was not feeling well, but Molly insisted they get him outside for some fresh air. She pushed Joe, who was in his wheelchair with his favorite bell toy, back and forth along the walkway. Each time he passed by the house, Joe would start ringing the bell.

In spite of his decreasing physical and mental strength, Callahan said Joe never stopped communicating his affection and warmth.

“Even the week that Joe died, he was having a hard time that week, and I was moving him from the bed to the couch,” Callahan said. “I was sitting on the couch with him because I’d have to sit next to him to hold him up because he couldn’t sit up on his own. All of a sudden I feel this hand on my back, rubbing my back. And he got so thin so it was just this bony hand…and I thought, ‘Oh my God, Joe. What are you doing.’”

Callahan laughed at the memory.

“He was always touching, even until the end,” Callahan said. “I miss the touch.”

Maura Callahan and Douglas Louison would like to thank Community Based Classrooms and those who otherwise worked with Joseph for their dedication and support.

Sofia Tong can be contacted at [email protected].