Almost 30 years ago, Elizabeth Ginorio was diagnosed with multiple sclerosis, an incurable autoimmune disease that attacks the central nervous system and disrupts communication between the brain and the body.
The disorder has caused her to lose feeling in her hands, her feet, and the left side of her body.
The 59-year-old from New York jokes as she moves awkwardly across the living room of her home in Hollywood. “I’m not drunk, I swear! Just a little off-balance,” she says, smiling.
Life has been difficult for Ginorio. Not only does she have MS, but her daughter is disabled, her husband left long ago, her granddaughter suffers from a brain disorder after a premature birth, and she was recently diagnosed with complications from the COVID she caught earlier this year.
“I get by little by little,” she says. “Poco a poco.”
Ginorio was born in New York and spent her early years shuttling between Puerto Rico and the city. She moved permanently to the island at age 9 and stayed there until she was 23. She became a registered nurse in Bayamón and also got married there. Megan was born in 1989 in the Bronx and a second daughter, Kimberly, came two years later.
In 1993, Ginorio’s doctors discovered the MS. She lost use of the left side of her body, then was forced to retire and live on disability.
Things got worse a few years later when at age eight, Megan was diagnosed with muscular dystrophy, a neuromuscular disorder that causes loss of muscle mass and progressive weakness.
Ginorio’s husband left her and the girls in 1999. They moved to Fort Lauderdale to live with her brother, Anthony, who was diagnosed with cancer and died two months later.
In 2010, Ginorio bought a three-bedroom house on Atlanta Street in Hollywood. Soon, she started making renovations to accommodate Megan. She spent thousands of dollars installing wheelchair ramps, replacing gravel floors, and making a walk-in shower in the bathroom, among other things.
She is currently saving money to replace the windows, take care of a mold problem in one of the bedrooms and level the ground in the backyard to make it easier for Megan, who uses a wheelchair, to move around.
“She used to walk when she was little,” Ginorio says. “But by the age of eight or nine, it was debilitating.”
Megan’s disabilities also prevent her from getting a job, even though she has an associate’s degree in applied sciences. She says employers often change their whole demeanor when she shows up for interviews and they see her in a wheelchair.
Unemployment has put a damper on Megan’s holiday season.
“I would like to get people presents,” says Megan. “I can’t even do that sometimes because I don’t have a job.”
Kimberly, now 30, stays at the house occasionally. She works as a waitress at Morton’s Steakhouse in Coral Gables and has a five-year-old daughter named Maya Rivera, who was born prematurely when Kimberly was only six months pregnant.
The early birth impeded Maya’s brain from fully developing, and she is missing part of her frontal lobe. She only weighed around 10 ounces when she was born. Ginorio says she used to fit inside the palm of her mother’s hand. Maya has long struggled with ADHD and emotional issues. She was recently kicked out of pre-K.
Back in April, Ginorio’s doctor, Adnan Subey, recommended her to the Multiple Sclerosis Foundation, where she met caseworker Monique Fraser. In August, the foundation helped Ginorio pay her late water bill.
“I was really behind on the water,” Ginorio says. “I was waiting to get my income tax return to pay it off. But then something else came up. And then another thing came up. All of a sudden, they gave me a grant!”
The MS Foundation in Fort Lauderdale promised to help Ginorio with anything her medical insurance doesn’t cover.
“She is always willing to do whatever she needs to do for her daughter,” says Fraser. “She would always talk to me about [Megan], and she’s just always very spirited and very grateful for any type of assistance.”
Fraser nominated Ginorio for Wishbook because of both her situation and her strong will.
Ginorio says she needs a drier because the one she has now has been giving her trouble for the past year. It was already fixed once, but it broke again recently. She would also like an energy-efficient power generator because she wants to make sure her daughter’s bed can function properly in case of a power outage.
“I’d rather be safe than sorry,” she says.
Earlier this year, Ginorio caught COVID-19 and survived some difficult times. But she’s continued to have issues. She was recently hospitalized and prescribed steroids to combat breathing complications.
Despite the hardships that life has dealt her, Ginorio remains optimistic and appreciative of the things she has.
“I’m very active,” says Ginorio. “It’s just that my balance is off. I can’t go dancing because if I go dancing, everyone will fall down. It would be like a domino effect. They would be like, ‘did you have a drink?’ and I’d be like ‘yeah man I started when I got out of the house!’”
This story first appeared in the Miami Herald.