MONTICELLO — He may be small, he may be young, and he may be in a wheelchair, but 6-year-old Peter Ramirez led men five times his size in a merry chase around the Monticello High School track during The Cure SMA Walk-n-Roll Across America Saturday, Aug. 25.
Peter, a member of St. Mark Church, was diagnosed with Spinal Muscular Atrophy (SMA) at the Denver Children’s Hospital when he was only 9 months old.
“We have relied on prayers and faith to guide us through the diagnosis process,” said Marla Ramirez, Peter’s mother. “We believe that God has a plan for all of us and we don’t always understand the plan, but we must fulfill it.”
Peter, his older brother Sam, 9, and their parents, Marla and Trey, arrived in Monticello in May 2005. Trey, 40, is a sales representative for Dow AgroSciences. Marla, 35, is a member of the education faculty at the University of Arkansas at Monticello.
“August is SMA Awareness Month and the plan is to have all of the states have a fundraiser at some point,” explained Marla. “We did a ’Walk-n-Roll Across America’ when we were living in Indianapolis, but it’s hard to get out the word in a large city. Here, in Monticello, everyone knows everyone else and we had a great turn out.”
About 80 people walked, including members of Sugar Town Riders, a motorcycle group from Stuttgart that helps raise funds for local causes.
“A group of guys showed up at the track on their motorcycles,” Marla laughed, “and we knew who they were because they’d already sent a $300 donation. But they wanted to walk a lap with Peter to show support. Peter took off in his chair at 5 miles an hour and made those big guys run a lap behind him. They were pretty tired when they finished.”
The nearly $3,500 raised through the event will help fund research into medications and therapies. SMA is a genetic disorder, leaving the patient with muscle weakness that progressively worsens.
Peter now attends first grade at Monticello Elementary School.
“He uses his power wheelchair for mobility and he has a special adaptive classroom chair that allows him to sit closer to the floor level for eye contact with his peers,” she said.
Trey and Marla are originally from Zapata, a small town in South Texas.
“Trey and I feel that Peter’s diagnosis has united us with family and friends in a very special spiritual way that we might have not experienced without Peter’s trial. Our faith helps us meet each day’s challenges. Being in communion with Christ and our Catholic family brings peace and encouragement that no matter what happens we will be fine,” Marla said.
And Peter is a favorite at St. Mark. Everyone stops to chat with him in his motorized chair parked in the center aisle near the back of the church each Sunday. He zips out for children’s liturgy with the rest of kids.
And he inspires members of the congregation in different ways. Don Reynado, another St. Mark parishioner, attached a photo of Peter to his bicycle helmet during a 100K race, telling the Ramirez family that Peter was his inspiration. Reynado read about Peter in the local newspaper last fall.
“I knew they went to our church and I’d seen the family, but I had no idea why Peter was in a wheelchair,” he said. “After reading the article his mom wrote for the paper about SMA and seeing his photo, I was inspired by what he faces.”
“We had no idea how many people were being touched by Peter,” Marla said. “The family feels blessed to have him every day that we do, but we are always fearful of what might happen at any given moment.”
