Season to Share: Devastated by a genetic disorder, family of 6 faces eviction
On the worst days, when the tumors that plague his wife and two of their kids throw life off balance in painful and frightening ways, Nelson Torres focuses on love.
He remembers the day at the park in Yonkers, N.Y., nearly 15 years ago when he met Raysa Medina, the spunky, sweet woman who would transform his world within days. He remembers how she came up to him as he was chatting with her brother and said, “I don’t know you, but hi!” and how things “pretty much went from there.”
How is it that he never noticed his childhood friend had such a cool sister? He marvels at the thought still today as Raysa, five brain surgeries later, battles a rare genetic disorder that had just started to take hold of her nervous system when they met.
Today, their love story is the raft they cling to as the disease that killed Raysa’s mother and two sisters devastates their household. All this while a mountain of packed boxes rises in the living room.
Despite attempts to pay back rent, Nelson and Raysa are facing eviction at the end of November, a blow that comes as their medical struggles multiply.
► 2022 Season to Share nominees: Help your neighbors in need
'Surgery after surgery'
Raysa, 35, her daughter Iriana, 17, and niece Anaya, 15, suffer from neurofibromatosis type 2, a condition that produces tumors in the nervous system. Her two brothers currently struggle with the disease as well.
For Raysa, Iriana and Anaya, the mostly benign but debilitating tumors have affected the brain and the spine. Iriana had two brain tumors removed in July. Anaya, the daughter of Raysa’s late sister, had spinal surgery in 2019 and is facing brain surgery soon to remove a tumor.
Raysa lost much of her ability to hear during one of her surgeries. Her vision has been impacted as well. She has undergone eye surgery and two facial reconstruction operations.
“It’s surgery after surgery after surgery,” says Nelson, who schedules and attends every one of the family’s medical appointments.
He tells their story as Raysa and their four children look on in the dim, cool living room of their home. Nelson stops every so often to articulate his thoughts to Raysa via sign language when she has trouble hearing the words.
She and their two older kids are sensitive to sunlight. She needs help steadying her walk and keeping her balance.
“I can’t go outside, even to the mailbox. One of the kids has to walk with me because I can’t walk on my own,” says Raysa.
Following her children’s doctors’ recommendations, she home-schools Iriana, Anaya and 13-year-old daughter Janelliz, who has not shown signs of the ailment. Her youngest, son Nelson Jr., 11, attends a local elementary school that’s within walking distance from their Palm Springs home.
Family fights two battles at once: illness and housing/food insecurity
Walking distance is important for a family with no car. Nelson, the 36-year-old dad, walks his son to school each morning and continues on foot for more than a mile to the veterinary hospital where he worked his way up from janitor to vet tech.
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 at the animal clinic for one year now. The job is one of the reasons he’d like to find a home nearby.
“I started cleaning cages, then I went through the program to get certified as a VA (veterinary assistant). For me to leave that hospital, when they gave me a chance, I can’t see myself doing it,” he says.
He is particularly grateful to have the position after losing his job at an upholstery company at the height of the COVID-19 pandemic. That’s what started the family’s domino effect of lost savings, a lost rental home and emergency stays at hotels and at the cramped, small homes of the few local relatives.
They were able to save enough to move into their most recent home, a squat, blue house on a quiet Palm Springs street. But that home, too, proved elusive.
“The owner wants her property back. There’s nothing we can do,” says Nelson.
Once again, he and his family are waging two battles: one against illness, the other against housing and food insecurity. They try to get by on Nelson’s modest pay, Raysa’s disability benefits and $331 a month in food stamps for the entire family.
“That’s why we don’t have a car,” says Nelson, who relies on Medicaid-arranged transportation, cabs and emergency Uber rides to transport his family to and from doctor's and surgical appointments.
Raysa’s surgeons are at the University of Miami hospitals in Miami. Iriana and Anaya’s surgeons are at Joe DiMaggio Children’s Hospital in Hollywood. In July, the last time Iriana underwent surgery to remove two brain tumors, the Medicaid transport to Hollywood fell through. Nelson had to book an Uber, so his step-daughter could have the surgery.
Battling the odds
But having a car is not the family’s main need. Their priority is to secure a place to live. The local Boys Town South Florida branch has been helping the family find contacts and resources in the community. Nelson says the county’s Community Services Department might help with rent and a security deposit.
“The hard part is finding a house that will take the program’s assistance,” he says. “For the past month, I’ve contacted every agency I can think of and have had no luck.”
He has watched his family battle the odds in valiant ways, but Nelson fears what may happen if he can’t find a home. How will it impact his family’s already fragile life? The implications terrify him.
What gives him strength, however, is what has fortified his soul since that day in 2008 when he met Raysa at the park. He learned she would face her first neurofibromatosis surgery less than two weeks later. He was instantly concerned, drawn to be with her. He learned she had a young daughter, Iriana. What would happen to her?
“But she wouldn’t let me go to the hospital,” he says.
So while Raysa was at the hospital, Nelson would walk an hour to her home every day to see Iriana.
“I would make sure she ate, that she had lunch and snacks. Then I would go home and call the hospital to find out how Raysa was doing,” he says.
Raysa nods at the memory and catches his eye as he finishes the thought.
“The first day she came home, I was there,” Nelson says. “And I’ve been there ever since.”
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Nelson Torres’ Wish
Nelson Torres and his family are waging two battles: one against a rare and devastating illness, 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 produces tumors in the nervous system and requires repeated surgeries to remove them. Apart from facing eviction, the family has no car to get them to medical appointments. They desperately need a place to live and a reliable vehicle. They also could use gift cards for groceries, supplies and children’s clothing for the family.
Nominated by: Boys Town South Florida, West Palm Beach
This article originally appeared on Palm Beach Post: Charity: West Palm Beach family faces eviction. How to donate.
