Wish Book

Wish Book: Severely disabled 4-year-old needs a costly wheelchair

In Hialeah, from the left: Dad Alfredo Rojas holds 1-month-old daughter Daniella; Daylan, 5; and mom Giselle with Angel, 4.
In Hialeah, from the left: Dad Alfredo Rojas holds 1-month-old daughter Daniella; Daylan, 5; and mom Giselle with Angel, 4. FOR THE MIAMI HERALD

At 4, Angel Rojas seems tall for his age. You might not know it, though, because he cannot stand.

Afflicted by a series of disorders, including hydrocephalus and cerebral palsy, Angel spends most of his day in a wheelchair. But he’s grown, and the fit is tight. Angel, who is restless, squirms uncomfortably in the chair and sometimes tries to get out of the restraints, his mother, Giselle Berroa, says.

Berroa and her husband, Alfredo Rojas, have their hands more than full with a growing family: Angel is also blind, cannot speak and suffers from epilepsy. Angel’s 5-year-old brother, a big, friendly boy named Daylan, has attention deficit and hyperactivity disorder and is developmentally delayed.

And they just had a healthy baby daughter, Daniella, who is 1 month old.

“It’s three of them,” Berroa said with a smile in the family’s snug Northwest Miami-Dade town home as Daniella began to cry in her bassinet while she put Angel to bed for the evening. “This is not easy.”

Considering all that ails him, she says, Angel is doing well, especially since he began attending a therapeutic day-care program about a month ago. The therapy seems to be helping, she said, and it’s been a huge relief for his parents, who say caring for the boy has been a struggle virtually from the day he was born at Jackson Memorial.

As Berroa’s pregnancy progressed, having Angel home, bored and unsettled, had become increasingly difficult, she said. Angel can get wound up and strikes himself on the forehead frequently with his open palm.

“Now he’s calmer when he gets home,” she said. “They take good care of him.”

Angel was born with congenital hydrocephalus. Within three days of his birth, he underwent surgery to install a shunt in his head that drains the excess cerebral fluid caused by the condition. He was doing OK after that, Berroa said.

But at about six months, he began suffering from seizures — Berroa said she first noticed when Angel turned purple while eating — and was diagnosed with epilepsy. Medications to control convulsions that hit him up to 30 times a day at first seemed to make his condition worse, Berroa said. Now seizures are down to five or six a month, she said.

“It was like a nightmare,” she says of those first few years. “We were always at the hospital. And we had another boy to take care of. It was horrible.”

She’s from Venezuela and he’s from Cuba — he hasn’t seen his family in 20 years, Berroa said — and neither has close relatives in Miami to help with the kids.

Finances are tight. Alejandro Rojas does house-painting and landscaping. She was bringing in some income selling cosmetics from home, but had to stop after giving birth. Though Daylan attends pre-K and Angel spends the day at the specialized program, she now has Daniella to look after.

And nights with a baby and a severely disabled child are not easy, either. Angel wakes often, even with sleep medications.

To make Angel’s life a little more comfortable, caseworkers at the Agency for Persons with Disabilities nominated the family for help through the Miami Herald’s annual Wish Book drive.

They say Angel would benefit from a new custom wheelchair. But Medicaid will cover the cost of the expensive chair only once every five years, and he’s had his current chair for only a couple of years, Berroa said.

“He has grown, and he’s gotten out of the chair,” she said. “It’s uncomfortable for him. But it’s where he spends most of his time. For me, it’s essential that he have a secure chair that is comfortable.”

She would also like a new, padded bed for Angel to replace a wooden crib he now sleeps in and which he will soon outgrow. When he gets restless, he can thrash around suddenly, and she’s afraid he will hurt himself on the crib’s sharp corners.

Angel would also benefit from musical toys, which soothe him: When his mother hands him a toy that makes sounds, Angel grasps it and becomes quiet and still in his crib, listening closely.

How to help

Wish Book is trying to help hundreds of families in need this year.

▪ To donate, pay securely at MiamiHerald.com/wishbook

▪ To give via your mobile phone, text WISH to 41444

▪ For information, call 305-376-2906 or email wishbook@MiamiHerald.com

▪ Most requested items: laptops and tablets for school, furniture, accessible vans

Read more at Miami Herald.com/wishbook

Related stories from Miami Herald

  Comments