Farmworker’s wife raises 2 children with cerebral palsy

Juana Ramirez carries her son Raul, 12, out of bed on Sunday, Oct. 22, 2017, in Belle Glade, Florida. Raul has cerebral palsy.

“Lazy” was the word a doctor used to described Raul Jr. when his mother, Juana Ramirez, brought him in, concerned her son was not developing at the expected pace. Something about the word didn’t sit well with her. How could it be so simple?

She had noticed her son was incapable of doing what other kids could at his age: Hold a toy in their hands for a long period of time. Sit up straight.

Eventually, there was a proper diagnosis: Her son, now 12, had cerebral palsy.

To manage the treatment for one disabled child can be monumental for a mother, but Juana must manage treatments for two. Luckily, the second child’s diagnosis came faster, giving her a chance to start therapy sooner.

“I vowed the same would not happen with Melanie.” She glances down at her daughter, who sits in a therapeutic walker. Melanie, 17 months, also has cerebral palsy.

Unlike in Raul Jr.’s case, Melanie’s physical treatments started early. The child appears to be more flexible and expressive than her older brother.

Juana’s oldest child, Patricia, is a smart 16-year-old girl who loves math and wishes for more time with her time-strapped mother. A generally happy girl, she has grown more brooding since the baby came along.

Raul Alcala holds his son, Raul, while his daughter Patricia plays with Melanie.

“She’s very sentimental. She says I don’t pay attention to her because I’m spending all my time with the other two,” says Juana, 40, whose husband Raul Alcala works in the nearby fields.

Those sentiments helped to sink the girl’s grades, says the mother. When it was brought to Juana’s attention that Patricia was skipping homework assignments, she sat down for a heart-to-heart with her daughter.

“You are healthy, thank God. I know this is hard for you, but you have to help me by being strong,” Juana told her. “God only knows why he sent us this boy, and we are blessed. We have to enjoy him and love him because he is good. We have to live for Raulito.”

Juana says she lives for all her children. Her greatest fear? The thought that something might happen to her. Who will take care of her children?

Currently, the family of five lives in a small, weather-beaten trailer. It rattles to the core each time the train passes on nearby tracks. Rain and storms have caused the roof to leak and the walls to fill with moisture. Juana believes this is the primary cause of her children’s asthma.

As baby Melanie gets older, the space becomes more cramped. The living room barely holds Raul Jr., his therapeutic walker, Melanie and her therapeutic walker. One child must be moved before the other can be pulled or pushed through.

An extremely organized woman, Juana begins each day in the predawn hours, cooking the day’s meals for the family and juggling her children’s appointment lists. Baby Melanie goes to physical therapy on Monday, Wednesday and Thursday. Raul Jr. goes Monday, Tuesday, and Wednesday. Juana sometimes drives hours a day, as some of those appointments take place nearly an hour away, near Wellington.

Her son’s Tuesday appointment is a half hour of equestrian therapy at a Loxahatchee ranch. When Juana heard the therapy is beneficial for the boy’s spine, she reworked the family’s meager budget and the boy’s disability income to secure a therapy spot.

“I don’t care if I have to go without food myself,” she says. “If it’s important that my son have this treatment, then I want him to have it.”

JUANA’S WISH:

A Belle Glade farmworker’s wife, Juana Ramirez, 40, spends her days caring for her two younger children, ages 12 and 17 months, who both have cerebral palsy. The family shares a ramshackle trailer that just barely accommodates the children’s therapeutic walkers. With most of the family’s meager budget going toward the care of the disabled youngsters, the needs of Juana’s first-born child, 16-year-old Patricia, have been shelved. The diligent high school student could use a home computer to complete homework assignments. The family needs a new home with space for the younger children’s medical equipment, working appliances and furniture. Juana would benefit from new tires and repairs for her vehicle. Her son Raul Jr. would benefit from a medical bed, and he and his sister need medical car seats.

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Photography by Calla Kessler / Staff

Nominated by Families First of Palm Beach County

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