Parents struggle to provide glasses for young sons
Greila Javier and Alexis Benavides Jorge need help to provide special glasses for their two sons, who suffer from extreme light sensitivity. Their Wish Book list also includes a sofa, mattress, car seat and toys.
The sun is out. It is a beautiful Miami winter day. Greila Javier would love to take her three children to a park or the beach, or even a stroll around the block. Oh, what she would give to spend Saturday mornings watching her 6-year-old son, Alexis, play a sport, like some of the other kids in his kindergarten class.
Instead, most days, she keeps her kids inside their dimly lit one-bedroom, onebath Northwest Miami duplex, where the family of five sleeps in one room and keeps its belongings in one closet. Alexis and his 21-month-old brother, Erick, suffer from an inherited, degenerative eye condition called cone-rod dystrophy, which causes extreme light sensitivity. Every time they step outside, their eyes shut.
Erick is required to wear tinted glasses at all times, even while indoors, as his case is so severe. Alexis squints inside, and has trouble seeing. Outside, he struggles to keep his eyes open, and has gotten bullied in the school playground. When they cross a street, Alexis holds the hand of his 4-year-old sister, Solimar,
who does not have the vision problem and has taken on the role of junior caregiver for her two brothers.
The boys are in need of special glasses with polycarbonate transition lenses, which change upon UV exposure from light to dark and provide 100 percent UVA and UVB protection. Each one received a pair of the glasses with the help of Medicaid and Miami Lighthouse for the Blind and Visually Impaired; but they have broken, and the brothers are outgrowing them and will soon need another pair.
Javier and her husband, Alexis Benavides Jorge, can’t afford to spend the $800 it would cost to replace both pairs of glasses. They are scraping to make ends meet. When construction work wasn’t bringing in enough income, Benavides Jorge decided to drive an Uber. He typically leaves the house at 5 a.m. and works until 8 p.m. On weekends, he sometimes heads out at 3 a.m. to cater to the clubgoers. The more flexible work schedule allows him to help take the children to the doctor and other appointments.
Javier, 26, was a housekeeper at a downtown Miami hotel and made $1,200 per month, but she had to spend $800 of that on child care, and didn’t feel her special needs kids were being adequately taken care of, so she decided to stay with them as much as possible and drive an Uber for a few hours in the mornings while the children are in school.
There isn’t much business in the mornings, though. Just barely enough to cover the gas costs. On a typical morning, she makes $30 to $40, and uses it to buy toilet paper, paper towel, laundry detergent, and other cleaning products.
Those few hours driving an Uber can be scary, though, she said.
“Being a woman alone in a car with a man sometimes makes me very uncomfortable,” Javier said. “I recently drove a man from Miami Beach to Doral, and he was very belligerent and vulgar. We are required to drive the routes the Uber GPS instructs us, but he wanted me to go a different way, so he started insulting me and saying `F-you, F-you’ over and over.
“I don’t speak much English, but I know enough to know he was calling me stupid and using vulgar words. Maybe he was drunk, I don’t know, but he made me very nervous. As we sat in traffic, I just kept praying that the ride would end soon. And for all that stress, the fare was $13.74. And he didn’t give me a tip.”
Despite their financial hardships, Javier and Benavides Jorge do everything they can to make their children happy. They recently purchased two plastic kids’ Frozen and PAW Patrol beds for Solimar and Alexis so they wouldn’t all five have to sleep in the same queen bed.
When the kids asked for a Christmas tree, they got one. It sits in the corner of the living room, decorated with blue, white and silver ornaments and a construction-paper Santa Claus that Alexis colored at school. Also hanging from the tree is a letter Alexis wrote to Santa. He asks for one gift — a remote control truck.
“I put my name on the letter so he’ll know he’s in my house,” Alexis said. “I have been a good boy because Santa only gives presents to children who behave.”
Solimar also has one main Christmas wish — a “Let it Go” doll, her way of saying an Elsa doll from the movie, “Frozen.” She is fascinated with that movie, and second on her wish list is an Elsa costume or another princess dress.
Solimar loves to dress up. In fact, when a Herald reporter showed up at the Benavides home for an interview, Solimar went into her room and changed out of her T-shirt and leggings into a dress and gold glitter shoes. “She always does that when company comes,” her mother said, proudly.
Erick is too young to ask for a Christmas gift, but his parents would like a car seat for him, as the one they have is falling apart.
The Benavides could also use a new living room sofa and a queen-size mattress, as both are water damaged from ceiling and air conditioning leaks. Javier puts three layers of fitted sheets on the mattress to protect themselves from the mildew. The sofa, protected from further damage with rolled-up towels, remains damp, and smells musty.
Because they all five share one closet in the bedroom, there isn’t enough room for everything, so Javier stores much of the kids’ clothing in a giant garbage bin that she covers up with a floral sheet. She would love a small dresser with drawers for the children but has been unable to save enough money to buy one.
“We do the best we can, but it’s very hard with limited money and three small kids, two of them with special needs,” she said. “Their vision will never get better. This is something they will have to live with the rest of their lives. I would love to take classes, learn English, and start a career, but I don’t see how that’s possible right now. My purpose in life now is to make life as good as I can for my children. Everything else will have to wait.”
Miami Lighthouse nominated the Benavides family for Wish Book. The family joined Lighthouse in May 2018 seeking help for Erick and Alexis. They both take special classes at the Lighthouse Learning Center.
“While the family always tries to maintain a positive outlook and see the good in all, they have been experiencing many financial difficulties as a result of being a one-income family with three children and two parents,” said Betty Chavarria, the Lighthouse representative. “This family is extremely deserving of all the requested items. The parents play an active role in their children’s lives and want them to have all the things they deserve to be successful in their daily lives.”