On the worst days, when tumors afflicting his wife and two of their children throw lives off balance in painful and frightening ways, Nelson Torres focuses on love.
He remembers the day he spent in the park in Yonkers nearly 15 years ago when he met Risa Medina, the beautiful, fearless woman who would change his world in a matter of days. He remembers how she came up to him while he was talking to her brother and said, “I don’t know you, but hello!” And pretty much how it went from there.
How did he never notice that his childhood friend had an amazing sister? He marvels at the thought still today as Raisa, after five brain surgeries, is battling a rare genetic disorder that was just beginning to take over her nervous system when they met.
Today, their love story is the boat they’re clinging to as the disease that killed Risa’s mother and her two sisters ravages their home. All this while a mountain of packed boxes rises through the living room.
Despite attempts to pay the rent, Nelson and Raisa face eviction at the end of November, a blow that comes as their medical struggles mount.
surgery after surgery
Raisa, 35, and her daughter Iriana, 17, and niece Anaya, 15, have neurofibromatosis type 2, a condition that produces tumors in the nervous system. Her two brothers are also currently suffering from the disease.
For Raisa, Irina and Anaya, the mostly benign and debilitating tumors have affected the brain and spine. Irina had my brain tumor removed in July. Anaya, Raisa’s late niece, had spinal surgery in 2019 and will soon undergo brain surgery to remove a tumor.
Raisa lost a lot of her ability to hear during one of her surgeries. Her vision was also affected. She underwent eye surgery and a facial reconstruction.
“It’s surgery after surgery after surgery,” says Nelson, who schedules and attends all of the family’s medical appointments.
He tells their story as Raisa and their four children look on in the dark and wonderful living room of their home. Nelson stops every now and then to sign his thoughts to Raisa when she finds it difficult to hear the words.
She and her two older children are sensitive to sunlight. She needs help keeping her gait steady and maintaining her balance.
“I can’t go out, even to the mailbox. One of the kids has to walk with me because I can’t walk on my own,” says Raisa.
Following her pediatricians’ recommendations, she schools Irianna, Anaya, and her 13-year-old daughter, Janlize, who shows no signs of illness. Her youngest son, Nelson Jr., 11, attends a local elementary school within walking distance of their home in Palm Springs.
The family is fighting two battles simultaneously: illness and housing/food insecurity
Walking distance is important for a family without a car. Nelson, the 36-year-old father, walks his son to school every morning and continues on foot for more than a mile to the veterinary hospital where he worked his way from janitor to vet.
It’s a job he loves not only because it’s fairly close to home but because his bosses believe in him, says Nelson, who has been working at the animal clinic for one year now. The job is one of the reasons he wants to find a home nearby.
“I started cleaning cages, then I went through the program to get my VA (Veterinary Assistant) certification. For me to leave that hospital, when they gave me the chance, I can’t see myself doing that.
He is especially grateful to have the position after losing his job at an upholstery company at the height of the COVID-19 pandemic. This is what started the family’s domino effect of lost savings, the loss of a rented home and emergency accommodation in hotels and in the cramped little homes of the few local relatives.
They’ve managed to save enough to move into their latest home, a squat blue house on a quiet street in Palm Springs. But this house, too, proved elusive.
“The owner wants her property back. There’s nothing we can do,” says Nelson.
Once again, he and his family are fighting two battles: one against disease and the other against housing and food insecurity. They try to get Nelson’s modest wages, Risa’s disability benefits and $331 a month in food stamps for the whole family.
“That’s why we don’t have a car,” says Nelson, who relies on Medicaid-arranged transportation, taxis and emergency Uber rides to get his family to and from doctor’s appointments and surgery.
RISA surgeons work at the University of Miami Hospitals in Miami. Iriana and Anaya’s surgeons work at Joe Dimaggio Children’s Hospital in Hollywood. In July, the last time Irina had surgery to remove two brain tumors, Medicaid’s move to Hollywood broke down. Nelson had to book an Uber, so his stepdaughter could have the surgery.
He’s proud his family is battling the odds, but what if there’s no home?
But owning a car is not a basic family need. Their priority is to secure a place to live. The local Boys Town South Florida chapter helps the family find contacts and resources in the community. Nelson says the county’s Department of Community Services may help with the rent and security deposit.
“The hard part is finding a home that will have the help of the program,” he says. “For the past month, I’ve contacted every agency I can think of with no luck.”
He’s watched his family fight the odds in brave ways, but Nelson fears what might happen if he can’t find a home. How will it affect his family’s already fragile life? The repercussions terrify him.
However, what gives him strength is what has fortified his spirit since that day in 2008 when he met Raisa in the park. It was learned that she would have her first neurofibromatosis surgery in less than two weeks. He was instantly anxious, drawn to be with her. He learns that she has a young daughter, Iriana. What will happen to her?
“But she wouldn’t let me go to the hospital,” he says.
So while Risa was in the hospital, Nelson would walk one hour home every day to see Iriana.
“I would like to make sure that she ate, that she had lunch and snacks. Then I would go home and call the hospital to find out how Raisa was doing.
Raisa nodded at the memory and caught his eye as he finished the idea.
“The first day she came home, I was there,” says Nelson. “And I’ve been there ever since.”
Desire Nelson Torres
Nelson Torres and his family fight two battles: one against a rare and devastating disease, and the other against housing insecurity. The 36-year-old father, who works as a veterinary technician to support his family of six, is struggling to find housing as his wife and two of their children suffer from neurofibromatosis type 2, a condition that leads to tumors in the nervous system. It requires repeated surgeries to remove them. Aside from facing eviction, the family does not have a vehicle to take them to medical appointments. They desperately need a place to live and a reliable cart. They can also use gift cards for groceries, supplies, and baby clothes for the family.
Candidacy: Boys Town South Florida, West Palm Beach