Sitting sideways on a sofa, 14-year old Patricio Miguel Cazes greets visitors to his home with a big smile. When he hears the word “photo,” his eyes light up and he starts moving into his favorite pose.
Although he has to crawl around the house, he does not ask for help from his mother, María Zapata.
Patricio was born with meningomyelocele, a type of spina bifida that occurs when the spinal column does not close before birth, leading to a weakness of the hip, legs or feet, and possibly paralysis, among other medical issues. At 14, Patricio has undergone 15 surgeries, the first two when he was a newborn.
But despite his condition, Patricio is an active and energetic teen. Over a couple of hours, he talks about his life, builds a toy, plays with a computer tablet, phones his father and crawls around the house. And, all the time he is watching mom, to make sure he didn’t misbehave.
Patricio was born in Argentina but has been living in the same house west of Little Havana since his arrival 4 ½ years ago with his mother and 18-year-old brother Matías. His father lives in Ecuador, but they chat every Sunday on Skype.
The Citrus Grove Middle School eighth grader gets 45 minutes of rehabilitation therapy once a week.
But his favorite time of the week is Fridays, when he goes to Bryan Park to play tennis. Racquet in hand and sitting on a special wheelchair for sports, Patricio challenges his coach on the other side of the net.
He also enjoys other outdoor activities, like those offered at Shake-A-Leg Miami, a nonprofit dedicated to providing water sports opportunities for disabled children. His favorite sports are basketball, tennis and especially soccer. His idol is Argentine player Lionel Messi, who he plans to support next year in the World Cup.
Patricio’s wish is is for a special bicycle and a multigame table at home so that he can entertain himself and stay active. It’s not just any bike. It’s a special bike for kids with motor disabilities, which helps them to stay upright and keeps their legs apart.
His mother said the bicycle will allow him to exercise and strengthen his legs, which will help him to walk again.
“He wants to do things, but he’s limited,” she said.
“If I had that bicycle, I would go to Shenandoah Park every week to race,” he said.
Because Patricio cannot walk, he moves around on all fours, in a wheelchair or with the help of someone, usually his mother or his brother.
Three years ago, Patricio walked almost every single day near his home with the help of a walker.
“He walked around the block and you saw him come back all sweaty,” said his mother.
But now his legs are bent and the prosthesis on his left leg hurts him, said Zapata. Doctors at Shriners Hospital for Children in Tampa - where he’s primarily being treated - have told her they plan to perform surgery soon. The surgery has been delayed because of a bedsore on his lower back, caused by pressure from continued use of the wheelchair.
Although the special bicycle would be a dream for Patricio, his mother pointed out that he needs other things for a better quality of life, and a normal life.
One item is a bed with a special foam mattress, ideally with a remote control to elevate his extremities when he needs to. His current mattress was a gift, but it is soft and not good for him.
“Because of the bedsores, he cannot be on hard surfaces,” his mother said. “He cannot have pressure on his body.”
Also on her list is a chair for the bathtub, to make his showers easier, and a folding ramp to allow her to push his wheelchair up the two steps in front of the house, instead of having to carry him. Her back already hurts from moving him in and out of the house.
“These are the things that I cannot give him because all my salary goes for the rent, for food and to pay the consultations in Jackson [Memorial Hospital] and to buy medicines,” said Zapata, who cleans homes for a living. She cannot work a fixed schedule because of all of his appointments.
Doctors have told her that her son will not be able to walk again, but Zapata refuses to lose hope.
“My dream is that he walks again,” she said. “When Patricio was born, the doctors told me that he would not be able to do anything, that he would not be able to walk and that perhaps he would be a vegetable,” she said. “They told me so many things would not be done, and they were done. I am not going to lose the hope that he will walk again, any way he can.”