LODI, NJ - A simple conversation with a neighbor turned into a community effort to help one Lodi family obtain a much-needed chairlift for their young son.
Justin Pagan is a nine-year-old child who is battling Bethlem Myopathy, a rare form of muscular dystrophy. At just 4 feet 6 inches tall, he only weighs 40 pounds. Bethlem myopathy is a rare disease affecting the skeletal muscles and connective tissue, according to the National Institutes of Health. The disease is characterized by slowly progressive muscle weakness and joint stiffness (contractures). It most often affects the fingers, wrists, elbows, and ankles. Bethlem myopathy is estimated to occur in 0.77 per 100,000 individuals.
"It's been a long road for us," said Tyra Pagan, Justin's mother. Justin was diagnosed three years ago. Tyra and her husband, Luis, had to carry Justin up and down the apartment's steps, from the bedrooms to the living area. She's even taken a leave of absence from her job at a local university.
The Pagans neighbor, Keisha Ferguson, reached out to James Tassillo of the Lodi Chamber of Commerce and Lodi C.A.N., Community Action Network. He reached out to Justin's mother, Tyra, who said the family of five was given permission by the Lodi Housing Authority to install a chairlift for Justin.
"When the Pagan Family was brought to my attention, I felt that this is something that Lodi C.A.N. has to take on," said Tassillo. "After speaking to Tyra Pagan and hearing what day to day challenges Justin was going, through albeit keeping a positive outlook, I brought this to the attention to our Board of Directors and President of the Lodi Chamber Tom Rachelski to all get on board."
"James got the ball rolling," said Tyra. She said he found the chairlift company right in Lodi, Mobility Service, run by longtime borough resident Juner Williams.
"I knew at this point it seems like there was divine intervention looking on the Pagan family," said Tassillo.
Tassillo also reached out to Mayor Scott Luna and Deputy Mayor Vinny Martin to get their assistance. The group solicited donations from local businesses, organizations, and residents to underwrite the chairlift, including Neglia Engineers, Lodi Chamber of Commerce, Lodi C.A.N., the Cardinalle family, Esq Allen Spinello, Bergen Psychology, Luna, Martin, and Tassillo.
From the first conversation to the installation, the project took just three weeks, according to Tyra. She also praised Williams, who she said took the time to explain the system and its operations, which has a battery back up, to Justin.
Tyra said her two other sons, Jordan and Jacob, appreciate what the chairlift means to Justin.
"His brothers are so happy for him," she said. "His older brother (Jordan) understands it means more independence, and he's very happy for him."
"As Deputy Mayor along with our Mayor Scott Luna and the rest of the Council, it was my honor to be able to help Justin and the Pagan family," said Martin. "It makes me proud to represent the residents of Lodi and to see not only Lodi C.A.N (Tom and James) continue to support and connect with this local governing body but to also have our Borough professionals and other Lodi families donate and support this and other causes. It was a great team effort."
"I was so grateful...I was at a loss for words," said Tyra. "As a mother, I was so elated. People came together for such a cause. I can't even explain...for the generosity of people, especially at a time like this."
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