by Rebecca Shwartz
Jake Marrazzo didn’t know he would stop walking at twelve years old.
He wasn’t prepared when he couldn’t walk up his own driveway and up the stairs, unable to get to his room in his three-story house. “We thought he was just being lazy,” said mother Sheryl Marrazzo once Jake stopped at the edge of the sidewalk. “We didn’t know he had this disease.”
Marrazzo was born with Duchenne Muscular Dystrophy, a muscle degrading disorder similar to ALS. Duchenne is commonly found in children. It starts from the mid-section and spreads to their legs and arms over time. When Marrazzo began to fall in preschool too much to be just clumsy, his parents went to the Boston’s Children Hospital to see if there were any problems with his body that made him fall more often. Test results pointed to shortened heel cords as the cause for the falling, but he was not tested for Duchenne as he continued treatment for his heel cords.
As Marrazzo grew, he didn’t gain weight, he was falling even more than before getting treatment, and he had severe anxiety problems. They then met with a geneticist to search for possible errors in his X chromosome called Fragile X that may cause the constant falling. The tests showed high creatine kinase levels, which is what occurs during heart attacks, muscle death. He was diagnosed with the disorder before his eighth birthday. He stopped walking completely by twelve years old.
Mrs. Marrazzo couldn’t find much information on the disorder. “It occurs in about every one in 3,600 births,” she said, “and it’s rare that they live to their thirties and forties.”
One thing was for certain though; they needed a wheelchair and a way to get him to the top floor. They created a fundraiser with a Star Wars-themed 5K. They managed to raise enough money to install an elevator for Marrazzo in the house. “The town rallied around us. [Painters] painted the house for no charge, and we got siding installed on the house for no charge,” she said.
Even after his diagnosis, Marrazzo didn’t know what Duchenne would mean for his future. “He looked up what would happen to him, and I regretted not telling him sooner,” his mother said. He found out he would soon be unable to do anything, and because his heart is a muscle, it would grow weaker until he died. But Marrazzo continued to stay optimistic.
“Duchenne is just a part of me,” Marrazzo said. “It doesn’t shape who I am because I don’t consider myself suffering from it.”
“John [my husband] and I don’t want others affected by Duchenne to have this fear of death, so we made 4 Jake’s Sake,” Mrs. Marrazzo said. They became an official organization in 2016 with an annual 5K run. The money raised goes towards installing elevators and ramps in houses of families affected by Duchenne.
“This year, on May 21 we raised about $7,000 with about 150 runners,” Mrs. Marrazzo said, showing pictures of her son singing the national anthem at the race with his cousin Sadie by his side. “He’s so optimistic, and he even asks, ‘Why does nothing bad ever happen to us?’ I wish we were as positive as he was.”
“I’m happy knowing I can help others affected by this disease and that they’ll be having an easier time. Someone I know had to build a wooden ramp just to get in their van, and I can help this way,” Marrazzo said.
Marrazzo stays involved in the community other than 4 Jake’s Sake by participating in the Drama Society through Pippin and Oz.
Marrazzo takes his new high school life in stride, aiming for valedictorian in ninth grade, even forgetting sometimes, he says, that he’s strapped to a wheelchair and that people stare at him for being “different”.
His mom mirrors his optimism. “We live everyday like it’s our last and hope for many more years in the future.