Walking tall: Marian student with muscular dystrophy raises public awareness

He was 7.

The pain was in Dante Passeri’s leg after he had finished playing basketball.

Like a toothache, the pain wouldn’t go away. Dante described the onset of the illness. A visit to the doctor led to several tests and then, after a biopsy’s confirmation, Dante and his family received the news. He had acquired a rare form of muscular dystrophy called Bethlem myopathy collagen that affects just one in 200,000 people. The disease can begin before birth, but it mostly is diagnosed during early childhood. This particular classification of muscular dystrophy is caused by a mutation of one of three of the body’s genes that weakens muscles and joints. BMC progresses slowly over time and becomes further debilitating with standing and walking.

Life-changing direction

“I suddenly thought that my son was one of Jerry’s Kids,” said Dante’s father, Jeff, in reference to the longtime TV telethon hosted by the late Jerry Lewis that raised money to help find a cure for muscular dystrophy.

With the several types of this disease, Jeff and his wife, Tricia, felt a bit fortunate when told Dante’s condition was a mild form of BMC.

He would not be in a wheelchair.

Dante, now 15 and a student at Marian High School, was placed into a weekly physical therapy program eight years ago at Northeast Physical Therapy Associates in Hazleton. Since then, his body is functional, yet limited to a slower pace of movement.

“I have pain in my legs, my arms and my back,” he said. “There’s hope that it can get better, but it will never go away.”

Dante explained that he has difficulty walking and he is unable to run.

“I have to walk at a slow pace. If I try to go too fast, the pain in my legs gets worse and I get very tired and frustrated.”

He doesn’t like to tell people about his condition, but his teachers need to know because sometimes he will be late to class. He still has to occasionally endure the school bully or the laughter from a group of snickering kids when he walks by. He’s gotten used to their actions, but he remains sensitive to the mockery.

Dante’s desire to play sports and be on a team cannot be fulfilled, but there is one activity he especially enjoys.

“I like to swim. When my body is underwater, I don’t have to put so much effort into movement.”

Turn the page and onto the stage

Despite Dante’s physical limitations, his mind and voice are perfectly healthy and a long time ago, he decided to put his mental and emotional energies into the performing arts.

“I actually started to perform before I got muscular dystrophy,” he said. “I was in a local ‘Schoolhouse Rock’ play when I was 6 years old. I really like to act and sing on stage.”

Dante believes he has performed in 36 stage plays in various community theaters. He’s played Snee, Captain Hook’s right-hand man, in ‘Peter Pan Jr.’ and a few years ago, he starred in ‘Beauty and the Beast’ at the Performance Works Drama in Motion Studio in West Hazleton.

“I do about four or five shows a year and I also like to help backstage moving the set. I can’t dance, but I’m good to do pretty much everything else.”

Acceptance and courage

Dante never forgets what he deals with every day. Each time he stands up or takes one step forward, his body reminds him that he can’t do what most kids his age can do.

“I’ll never be like everyone else,” he said. “I get upset, but I don’t get depressed. In fact, I no longer feel that I have to hide my disease from the world.”

For five years, Dante had attended a Muscular Dystrophy Association summer camp where he has made lifelong friendships. There he learned that, “You can’t do this” becomes “No barriers exist.”

As a member of the Students Against Destructive Decisions, Dante has become an MDA ambassador for Luzerne and Schuylkill counties. At Marian, he speaks before students and faculty to solicit supplies to benefit the camp through the Allentown MDA office. Inside a classroom, there are paper cutouts of raindrops and clouds suspended from the ceiling with thread. He has asked both teachers and students to take down a cloud or raindrop and donate a supply for the cause. So far, his efforts have obtained over 250 items, such as storage bags and boxes of chalk that will be useful at the camp.

Dante also goes “under cover” as a function of his ambassador responsibilities.

“I’ll walk into Lowe’s to buy something and the cashier is supposed to ask me if I want to buy a shamrock to support the MDA,” he said. “Sometimes they don’t ask. I just remind them that it’s an important cause and every contribution helps kids like me.”

A goal to help others

“I never thought Dante could do all that he is doing,” said his father. “He’s a very independent thinker, too and he holds nothing back when there are opportunities for him. He sings in the church choir. He ‘s not afraid to express himself in front of the public.”

Dante has stood tall before his teachers and classmates and openly talks about his condition. He tells them his father was adopted and they can’t find his biological origins to identity who carried the Bethlem myopathy gene.

“I explain to them that despite what I have to live with, I no longer ask, ‘Why me?’ I have aspirations to be a paramedic or become an educator or go to culinary school.”

Dante says he’s “shocked” that so many people look up to him now. He recently moved a class of freshmen and sophomore students to tears with his story.

“They even put a picture of me in the classroom,” he announced proudly.

His physical limitations have evolved from a personal struggle into a public inspiration. The life story of Dante Passeri has many chapters yet to be written about his success and achievements. When asked how he’s doing right now, there is no hesitation with his reply.

“I’m doing good.”