Every step Ana Pubillones takes in her trailer home is a risk.
The floor of the modest house is gradually sinking and boards cover holes in the living room and kitchen. The walls are falling apart and when it rains water comes inside.
“If you remove the boards you can see the grass under the trailer,” says Pubillones, lifting the corner of one of the boards. “See? There is the ground.”
The floor of her son Ariel López’s bedroom is worse, as it’s partially sunken. The 15-year-old, who has allergies, sleeps in his mother’s bed.
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Accommodating both of them in the bed can become uncomfortable when Ariel gets sick, which happens frequently. Pubillones, Ariel and another son, Alejandro López, have severe kidney problems. And Pubillones suffers from atria fibrillation, a condition that makes her heart beat irregularly.
Ariel is the least healthy, suffering from nephrotic syndrome, a combination of disorders that causes a protein imbalance in his urine and blood. His immune system is weak and he suffers from some cognitive disabilities. Any infection or allergy lead to stays in the hospital that last weeks, Pubillones said.
“Sometimes he is so swollen that he turns unrecognizable,” the mother said. “He can’t move in the bed, he is not comfortable standing up, seating or reclined. He retains the fluid in his body and I almost have to keep him from drinking water.”
Despite the unsafe conditions of their home, it is a very clean place. Pubillones makes sure to keep their home free of germs or dust to prevent Ariel’s allergies from getting worse. But it’s difficult because the dust and insects find their way into the house through the holes in the floor and walls.
The family wishes for a safe place to live without worrying about every step they take.
“The truth is that we are scared of living here, in these conditions,” Pubillones said. “If I could afford it, I would move right now.”
Helene Good knows that Pubillones has tried to cope. Good works at CCDH, a non-profit organization that since 1975 has helped people with disabilities. She nominated Ariel for The Miami Herald Wish Book after several construction supervisors who tried to help them declared the trailer irreparable.
“They live in unsafe conditions and they need a healthy home,” Good said. “Also she [Pubillones] is a mother who despite being sick is very devoted to her children.”
The family has lived in the trailer park for seven years after losing their house in Miami, when Pubillones could no longer afford the payments.
One day, when he was in kindergarten, Ariel came home with his entire body swollen. Thinking that is was a severe allergy, Pubillones took him to Miami Children’s Hospital, where he was diagnosed with multiple diseases.
Sometimes he stays in the hospital for an entire month. A homebound teacher goes to their house twice a week to teach Ariel.
Pubillones lost her job in a Red Cross office after missing work to care for her son. She has held temporary jobs and has occasionally sold clothes at local flea markets.
“It is difficult not to worry or even get upset over all these problems,” said Pubillones, who ended up in the hospital recently because her heart was beating quickly. “I sell little things here and there and even so I come short and it’s not enough to make it to the end of the month.”
Before, Pubillones received help from her parents, but they both died in the last two years. She does not receive help from the father of her children, who shows up sporadically.
Even so, Pubillones, who arrived from Cuba when she was 3, tries to be a happy person, energetic and funny.
“My grandmother in Cuba always said, ‘Laugh, clown, laugh and the world will laugh with you,’ ” Pubillones recalls. “I try to remain strong for my children.”
Ariel is shy and hardly talks. When he feels comfortable enough to talk, he says he is a Miami Heat fan. He particularly admires former Heat player Alonzo Mourning, who had a kidney transplant in 2003.
“He came to the hospital once and I shook his hand,” Ariel said about that special moment. “Sometimes I play basketball with my neighborhood friends.”
Ariel says he would meet more teenagers if he could go to school.
“I wish I could go to school,” he said.
But like his mother, Ariel’s biggest wish is a safe place to live, where he could sleep in his own room.
“To sleep in my own bed, that would be good,” he said.