At a recent Mobile Clinic in the steep hills of Nueva Esperanza, Renelmo Chavez arrived early in the morning and was first in line with his son, Dixon, riding on his shoulders. Dixon is 16, but he’s unable to walk on his own due to severe rheumatoid arthritis that began when he was just five years old.
The causes of juvenile arthritis are unknown, though it is usually an autoimmune disorder, which means that the body’s immune system mistakenly attacks healthy cells and tissues, causing inflammation and joint damage. In children, the resulting swelling, pain and stiffness severely limits growth and function. There is no cure; treatment focuses on maintaining quality of life and function with physical therapy and medication. Though Dixon’s condition is currently in remission, it’s left him with paralyzing pain in his hands and knees. He had a wheelchair, but it’s useless in the treacherous terrain near his house.
For years, Dixon’s dad carried him down the winding path to the paved street below each morning to take him to school. But now Dixon is too big and it’s too much of a strain for his father to carry him every day. So while his dad still leaves early in the morning to work, Dixon stays home with his 13-year old sister Ruth, who goes to school in the afternoons. His mother works as a housekeeper in another district of Lima, while his other three siblings go to school and work to support the family.
Dixon likes to spend his time watching soccer games, and says he wants to be able to walk again. He’d also like to go back to school, where his favorite subject was English. He already knows the basics: “how are you?” and “my name is.” Perched on a wooden chair at the doorway of his house, he helps his father to feed the chickens that run underfoot.
Renelmo, who moved with his family to Lima seven years ago so that Dixon could be treated in the national children’s hospital, is completely devoted to his son’s care. And between trying to earn a living driving a mototaxi in another part of town, and carrying Dixon to his various physical therapy and doctors’ appointments, he stays pretty busy. “Life here is hectic,” he says. “There are many things we need that we can’t get.”
MEDLIFE follow-up nurse Ruth Verona is on the case, accompanying them to appointments and making frequent home visits. She hopes medical specialists may help restore some of his range of motion. “The physical therapy is on hold for now, until we get his X-rays back,” she says. “We have to make sure that it will not cause any further damage to his fragile joints and bones.”
We’re also working with Renelmo and volunteer engineers on a new project: building a wheelchair ramp outside the house that would give Dixon some mobility, and hopefully ease Renelmo’s burden as well. “I just worry sometimes about what will happen to him when I can’t take care of him anymore,” Renelmo says. Though Dixon is nearly as big as he is, his father launches him onto his shoulders easily and without complaint as he heads out to yet another doctor’s appointment.
