Father riding 200 miles on bike to raise awareness about muscular dystrophy

By Ginny Kropf, correspondent Posted 4 September 2022 at 9:16 am

James Parisi, 4, lives a very active life with congenital muscular dystrophy

LEFT (Provided photo) – Anthony Parisi of Tonawanda holds his son James, who has Lama 2 congenital muscular dystrophy. RIGHT –Anthony Parisi, who is riding his bicycle from Syracuse to Buffalo to raise awareness of muscular dystrophy, stands with his bike in front of Bent’s Opera House on Saturday.

MEDINA – A Tonawanda father whose son has Lama 2 congenital muscular dystrophy spent Saturday afternoon and night in Medina during a 200-mile bike ride from Syracuse to Tonawanda.

Anthony Parisi works at Ingram Micro in Williamsville with Wendi Pencille of Shelby, and when Pencille learned about the bike ride, she arranged to meet with him when he arrived in Medina.

Provided photo: 4-year-old James Parisi flies a kite from his electric wheelchair, while twin sisters Caroline and Lucy run behind. Their dad Anthony and mother Molly are determined Michael should be active and have lots of fun. Dad will attempt to complete a 200-mile bike ride from Syracuse to Tonawanda today to raise awareness of muscular dystrophy.

Parisi is making the journey to raise awareness of muscular dystrophy in honor of his 4-year-old son James, who was diagnosed with Lama 2 congenital muscular dystrophy when he was 5 months old.

“It took a month for my wife Molly and I to get out of shock, and then we made a decision we would do everything we could to make James happy, healthy and strong and to create a community that loves him,” Anthony said.

“When James wants to do something, his father finds a way for him to do it,” Pencille said. “That’s how it was when James wanted to fly a kite.”

Anthony and Molly took the family, which now included 3-year-old twins Caroline and Lucy, to Olcott, where they found a big field for James to fly his spaceship kite. Anthony took a video of the site, with the girls running behind and James crying, “I’m doing it,” when the kite became airborne.

Anthony got the idea to ride his bike from Syracuse to Tonawanda because he used to enjoy biking.

“In my 20s I didn’t have a car and used to ride 50 or so miles a day twice a week,” Anthony said. “You get to see the world from a different perspective on a bike.”

Molly dropped Anthony off in Syracuse on Thursday and he rode to Savannah the first night. Friday night he spent in Rochester and arrived in Medina a little before 1 p.m. He planned to stay Saturday night at Bent’s Opera House, where they donated the room and dinner for him and Molly, who drove down to meet him, at Harvest Restaurant.

The bike ride is something Anthony said he has always wanted to do.

“I’m an explorer by heart and I enjoy being by myself,” he said. “And I hope to raise some awareness along the way.”

He said people have been donating online to a not-for-profit in California called Cure CMD, a global leader in science and research for muscular dystrophy. Click here for a link about the Parisi family. They have topped $10,000 in fundraising for the long bike ride.

“Realistically, James can’t experience things like other kids can, but we want to make them the best experiences we can,” Anthony said.

“I think our community is very good at supporting people with disabilities,” Pencille said. “I think what Anthony is doing is as much for everybody as it is for James. It’s educating a populace of people who some day might be in a position to do something or make decisions to benefit the handicapped.”

One of the best things about his journey is all the people he got to know along the way, Anthony said.